Guest guest Posted January 6, 2001 Report Share Posted January 6, 2001 - Your note really made me crack up. Thanks. I do not think people say things maliciously. Sometimes I tell people that I have a skin disease called rosacea and explain what it is. It makes me feel like I've unloaded a huge burden to tell others this rather than keep it all inside. Fran - New member > >Hello all, > >I was very glad to find that there are a lot of other rosacea sufferers out >there. I was beginning to think I was the only one whose face could stop >traffic... > >I have had rosacea since I was 12, though I didn't know what it was at the >time. (I'm 33 now.) My parents just thought I was a cute, pink-cheeked >little girl. Over the last five or six years, though, the pink cheeks have >turned red, and the redness spread to my forehead, chin, and chest. >Strangers started asking me if I was having a heart attack, had bad sunburn >or high blood pressure. Alcohol and hot weather seemed to make it worse. >(And I live in Arizona.) I hit the Internet for information and discovered >that there was a name for what had happened to my face. > >I finally went to see a new doctor (general practitioner) early this week, >and she has put me on an oral antibiotic (Erythromycin, 500mg) and Metragel. >I haven't been on it long enough to see results yet, but I wondered how long >I have to stay on the oral antibiotic -- my digestive system is not happy. > >Through the Web sites I have also discovered that the cleanser I have used >since I was a teenager (Noxema) has probably not been helping me any. Time >to go buy Cetaphil, it seems... > >I look forward to talking to and hearing from people who understand what >it's like to be approached by total strangers who tell you that " you're >really wearing too much rouge this morning " . > >Thanks for listening, > >Annette Arnold >Trying to keep cool in AZ I never knew dawn could break with peace so deep and hope so wide, 'till that first morning when I awoke, and you lay sleeping by my side. Sexton ----------------------------------------------------------------- Please read the list highlights thoroughly before posting to the whole group. See http://rosacea.ii.net/toc.html When replying, please delete all text at the end of your email that isn't necessary for your message. To leave the list send an email to rosacea-support-unsubscribeegroups Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2001 Report Share Posted January 6, 2001 Annete - Most rosaceans do not like cetaphil. Try either Zia Fresh Cleansing Gel (thru vitaminshoppe.com) or Almay Foaming Face Wash for Sensitve skin. The latter removes makeup better. Drink lots of water, eat fish (not shell fish) and check through the archives for other helpful tips. Good Luck. Fran - New member Hello all, I was very glad to find that there are a lot of other rosacea sufferers out there. I was beginning to think I was the only one whose face could stop traffic... I have had rosacea since I was 12, though I didn't know what it was at the time. (I'm 33 now.) My parents just thought I was a cute, pink-cheeked little girl. Over the last five or six years, though, the pink cheeks have turned red, and the redness spread to my forehead, chin, and chest. Strangers started asking me if I was having a heart attack, had bad sunburn or high blood pressure. Alcohol and hot weather seemed to make it worse. (And I live in Arizona.) I hit the Internet for information and discovered that there was a name for what had happened to my face. I finally went to see a new doctor (general practitioner) early this week, and she has put me on an oral antibiotic (Erythromycin, 500mg) and Metragel. I haven't been on it long enough to see results yet, but I wondered how long I have to stay on the oral antibiotic -- my digestive system is not happy. Through the Web sites I have also discovered that the cleanser I have used since I was a teenager (Noxema) has probably not been helping me any. Time to go buy Cetaphil, it seems... I look forward to talking to and hearing from people who understand what it's like to be approached by total strangers who tell you that " you're really wearing too much rouge this morning " . Thanks for listening, Annette Arnold Trying to keep cool in AZ ----------------------------------------------------------------- Please read the list highlights thoroughly before posting to the whole group. See http://rosacea.ii.net/toc.html When replying, please delete all text at the end of your email that isn't necessary for your message. To leave the list send an email to rosacea-support-unsubscribeegroups Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2001 Report Share Posted January 6, 2001 Annete - Most rosaceans do not like cetaphil. Try either Zia Fresh Cleansing Gel (thru vitaminshoppe.com) or Almay Foaming Face Wash for Sensitve skin. The latter removes makeup better. Drink lots of water, eat fish (not shell fish) and check through the archives for other helpful tips. Good Luck. Fran - New member Hello all, I was very glad to find that there are a lot of other rosacea sufferers out there. I was beginning to think I was the only one whose face could stop traffic... I have had rosacea since I was 12, though I didn't know what it was at the time. (I'm 33 now.) My parents just thought I was a cute, pink-cheeked little girl. Over the last five or six years, though, the pink cheeks have turned red, and the redness spread to my forehead, chin, and chest. Strangers started asking me if I was having a heart attack, had bad sunburn or high blood pressure. Alcohol and hot weather seemed to make it worse. (And I live in Arizona.) I hit the Internet for information and discovered that there was a name for what had happened to my face. I finally went to see a new doctor (general practitioner) early this week, and she has put me on an oral antibiotic (Erythromycin, 500mg) and Metragel. I haven't been on it long enough to see results yet, but I wondered how long I have to stay on the oral antibiotic -- my digestive system is not happy. Through the Web sites I have also discovered that the cleanser I have used since I was a teenager (Noxema) has probably not been helping me any. Time to go buy Cetaphil, it seems... I look forward to talking to and hearing from people who understand what it's like to be approached by total strangers who tell you that " you're really wearing too much rouge this morning " . Thanks for listening, Annette Arnold Trying to keep cool in AZ ----------------------------------------------------------------- Please read the list highlights thoroughly before posting to the whole group. See http://rosacea.ii.net/toc.html When replying, please delete all text at the end of your email that isn't necessary for your message. To leave the list send an email to rosacea-support-unsubscribeegroups Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2001 Report Share Posted January 6, 2001 Annete - Most rosaceans do not like cetaphil. Try either Zia Fresh Cleansing Gel (thru vitaminshoppe.com) or Almay Foaming Face Wash for Sensitve skin. The latter removes makeup better. Drink lots of water, eat fish (not shell fish) and check through the archives for other helpful tips. Good Luck. Fran - New member Hello all, I was very glad to find that there are a lot of other rosacea sufferers out there. I was beginning to think I was the only one whose face could stop traffic... I have had rosacea since I was 12, though I didn't know what it was at the time. (I'm 33 now.) My parents just thought I was a cute, pink-cheeked little girl. Over the last five or six years, though, the pink cheeks have turned red, and the redness spread to my forehead, chin, and chest. Strangers started asking me if I was having a heart attack, had bad sunburn or high blood pressure. Alcohol and hot weather seemed to make it worse. (And I live in Arizona.) I hit the Internet for information and discovered that there was a name for what had happened to my face. I finally went to see a new doctor (general practitioner) early this week, and she has put me on an oral antibiotic (Erythromycin, 500mg) and Metragel. I haven't been on it long enough to see results yet, but I wondered how long I have to stay on the oral antibiotic -- my digestive system is not happy. Through the Web sites I have also discovered that the cleanser I have used since I was a teenager (Noxema) has probably not been helping me any. Time to go buy Cetaphil, it seems... I look forward to talking to and hearing from people who understand what it's like to be approached by total strangers who tell you that " you're really wearing too much rouge this morning " . Thanks for listening, Annette Arnold Trying to keep cool in AZ ----------------------------------------------------------------- Please read the list highlights thoroughly before posting to the whole group. See http://rosacea.ii.net/toc.html When replying, please delete all text at the end of your email that isn't necessary for your message. To leave the list send an email to rosacea-support-unsubscribeegroups Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 18, 2001 Report Share Posted January 18, 2001 Hello everyone, I'm new to this forum and I'm glad to have found you all. I'm wondering if anyone has tried microdermabrasion for their rosacea? What were the results? Thanks, Peggy mailto:boborpeg@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 18, 2001 Report Share Posted January 18, 2001 I haven't had it done myself, but I know of others in the group (past or present) who have. I think the results are good, but modest, and it does take quite a few procedures to see these results. Some photoderm clinics may offer a " package " of photoderm plus microdermabrasion. It does disturb the surface layer of the skin enough that it could be a little too irritating if your rosacea is not already under control. If you are considering photoderm, you may get the results you want with that procedure alone--or, you get a few PDs under your belt, get the rosacea symptoms to remit, and then move on to microderm. Good luck! --- Peggy & Bob wrote: > Hello everyone, > > I'm new to this forum and I'm glad to have found you > all. > I'm wondering if anyone has tried microdermabrasion > for their > rosacea? What were the results? > > Thanks, > Peggy > > > mailto:boborpeg@... > > ----------------------------------------------------------------- > Please read the list highlights thoroughly before > posting to the whole group. See > http://rosacea.ii.net/toc.html > > When replying, please delete all text at the end of > your email that isn't necessary for your message. > > To leave the list send an email to > rosacea-support-unsubscribeegroups > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 13, 2001 Report Share Posted February 13, 2001 Just wanted to introduce myself to the list. I joined last week, following a diagnosis of rosacea last month. I was prescribed Metrocream, twice daily. Aquanil cleanser, and no creams, moisturizers, etc. I'm having a rough time with the regimen, as my skin is very dry, and at times uncomfortable without daily moisturizer. But I definitely want some improvement, so I'll do whatever works!! I haven't noticed any improvement yet, and I've been using the cream for almost a month now. My main symptom is acne-like papules, don't get much of the flushing that others describe. I blush, but it doesn't seem to hang around long. The skin in between the acne is a bit redder than the rest of my face, I guess. I don't have any broken vessels that I can see. The posts have been very interesting to read.... I still have lots of questions and hope to find ways to keep my skin looking better. Thanks to all! Suzi Saunders Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 4, 2001 Report Share Posted June 4, 2001 Thank you MJ nice to meet you My surgery was oct.3 in dartmouth hospital in lebanon by Dr. Burchard. >From: mjvallee@... >Reply-To: OSSG-NewEngland >To: OSSG-NewEngland >Subject: Re: New Member >Date: Sat, 2 Jun 2001 23:43:32 EDT > >Hi Deanna: > > welcome to the group....My name is jane Van Tassell (MJ) for >short....pre-op of 8/21/01 with Dr Reines at NWH....Nice to meet >you....Have >a good one! MJ _________________________________________________________________ Get your FREE download of MSN Explorer at http://explorer.msn.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 4, 2001 Report Share Posted June 4, 2001 Thank you MJ nice to meet you My surgery was oct.3 in dartmouth hospital in lebanon by Dr. Burchard. >From: mjvallee@... >Reply-To: OSSG-NewEngland >To: OSSG-NewEngland >Subject: Re: New Member >Date: Sat, 2 Jun 2001 23:43:32 EDT > >Hi Deanna: > > welcome to the group....My name is jane Van Tassell (MJ) for >short....pre-op of 8/21/01 with Dr Reines at NWH....Nice to meet >you....Have >a good one! MJ _________________________________________________________________ Get your FREE download of MSN Explorer at http://explorer.msn.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 4, 2001 Report Share Posted June 4, 2001 Thank you MJ nice to meet you My surgery was oct.3 in dartmouth hospital in lebanon by Dr. Burchard. >From: mjvallee@... >Reply-To: OSSG-NewEngland >To: OSSG-NewEngland >Subject: Re: New Member >Date: Sat, 2 Jun 2001 23:43:32 EDT > >Hi Deanna: > > welcome to the group....My name is jane Van Tassell (MJ) for >short....pre-op of 8/21/01 with Dr Reines at NWH....Nice to meet >you....Have >a good one! MJ _________________________________________________________________ Get your FREE download of MSN Explorer at http://explorer.msn.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 26, 2001 Report Share Posted October 26, 2001 Dear : I think your Internist did the right thing sending you to Dr. Lehman. I too have been seen by this practice, Dr. Sherman, who is in with Lehman. Their diagnostic center there at IU is superb. I have been in constant pain for approx. 2 years. I have a pancreatic Divisum and CP. I see a pain specialist for the pain, and am considering going to Cincy University to the pancreatic research center.....Dr. Ulrich. I have found that nothing I do makes the pain better. They just keep upping my Oxycontin dosage. I have severe flank pain, and fatigue due to no sleep. You are not alone. I lay for at least 6 hours on the heating pad, and it eases the pain slightly. I went to physical therapy this morning and they showed me some stretching exercises for the back because when you are in pain, you guard the area and that weakens the muscles and causes muscle pain on top of pancreatic pain. Seems to help a little. Hope all goes well. Don't be afraid to ask for pain meds. Tell them if they aren't strong enough. Good Luck, Holly Matheny Brookville,Ohio Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 26, 2001 Report Share Posted October 26, 2001 Dear : I think your Internist did the right thing sending you to Dr. Lehman. I too have been seen by this practice, Dr. Sherman, who is in with Lehman. Their diagnostic center there at IU is superb. I have been in constant pain for approx. 2 years. I have a pancreatic Divisum and CP. I see a pain specialist for the pain, and am considering going to Cincy University to the pancreatic research center.....Dr. Ulrich. I have found that nothing I do makes the pain better. They just keep upping my Oxycontin dosage. I have severe flank pain, and fatigue due to no sleep. You are not alone. I lay for at least 6 hours on the heating pad, and it eases the pain slightly. I went to physical therapy this morning and they showed me some stretching exercises for the back because when you are in pain, you guard the area and that weakens the muscles and causes muscle pain on top of pancreatic pain. Seems to help a little. Hope all goes well. Don't be afraid to ask for pain meds. Tell them if they aren't strong enough. Good Luck, Holly Matheny Brookville,Ohio Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 26, 2001 Report Share Posted October 26, 2001 Dear : I think your Internist did the right thing sending you to Dr. Lehman. I too have been seen by this practice, Dr. Sherman, who is in with Lehman. Their diagnostic center there at IU is superb. I have been in constant pain for approx. 2 years. I have a pancreatic Divisum and CP. I see a pain specialist for the pain, and am considering going to Cincy University to the pancreatic research center.....Dr. Ulrich. I have found that nothing I do makes the pain better. They just keep upping my Oxycontin dosage. I have severe flank pain, and fatigue due to no sleep. You are not alone. I lay for at least 6 hours on the heating pad, and it eases the pain slightly. I went to physical therapy this morning and they showed me some stretching exercises for the back because when you are in pain, you guard the area and that weakens the muscles and causes muscle pain on top of pancreatic pain. Seems to help a little. Hope all goes well. Don't be afraid to ask for pain meds. Tell them if they aren't strong enough. Good Luck, Holly Matheny Brookville,Ohio Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 16, 2003 Report Share Posted February 16, 2003 Welcome Barb! Horsley mom to 12 leehorsley@... new member Hi all, just want to introduce myself, i'm Barb i suffer from mito for many years now and would have never been diagnosed (have had many misdiagnosises) if it wasn't for my now 6 year old son Matt who suffers from mito, we both have multiple disabilities, I also have RA, degnerative bone disease and severe nerve damage, and Matt (my hero and inspiration)has white and gray matter disease, scoliosis, failure to thrive-fed via g-tube, reflux, mild autism-PDD, epilepsy, adhd. He has come a long way in his short 6 years, he was diagnosed with mito through muscle biopsy at age 3, and has become stronger and stronger, he only uses his wheelchair now if alot of walking is required. He is now included for the 1st time ever at school, he's in 1st grade. He has perty much caught up mentally, but emotionally very delayed. He is very high functioning as it goes for autistics. As his speech is advanced for his age, I am now struggling with speech. Maybe he'll help me with my speech therapy! We have alot of fun in water therapy together, as my husband helps and cheers us on. I have two older children a daughter 20 (who is now complaining of muscle pain) and my son 17 (hearing impaired). They are very sweet and helpful!!! I'd like my daughter to see my neurologist. Any sugesstions here on how i can bring this up to her without scaring her to death???? Looking forward to making friends here!! Barb aka matts_mom96Please contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 16, 2003 Report Share Posted February 16, 2003 Welcome Barb! Horsley mom to 12 leehorsley@... new member Hi all, just want to introduce myself, i'm Barb i suffer from mito for many years now and would have never been diagnosed (have had many misdiagnosises) if it wasn't for my now 6 year old son Matt who suffers from mito, we both have multiple disabilities, I also have RA, degnerative bone disease and severe nerve damage, and Matt (my hero and inspiration)has white and gray matter disease, scoliosis, failure to thrive-fed via g-tube, reflux, mild autism-PDD, epilepsy, adhd. He has come a long way in his short 6 years, he was diagnosed with mito through muscle biopsy at age 3, and has become stronger and stronger, he only uses his wheelchair now if alot of walking is required. He is now included for the 1st time ever at school, he's in 1st grade. He has perty much caught up mentally, but emotionally very delayed. He is very high functioning as it goes for autistics. As his speech is advanced for his age, I am now struggling with speech. Maybe he'll help me with my speech therapy! We have alot of fun in water therapy together, as my husband helps and cheers us on. I have two older children a daughter 20 (who is now complaining of muscle pain) and my son 17 (hearing impaired). They are very sweet and helpful!!! I'd like my daughter to see my neurologist. Any sugesstions here on how i can bring this up to her without scaring her to death???? Looking forward to making friends here!! Barb aka matts_mom96Please contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 17, 2003 Report Share Posted February 17, 2003 Welcome Barb, I am and my son is Cameron age 2. I have three other children, all girls. I can not offer any advice at this time, but want to say welcome. -----Original Message----- Sent: Sunday, February 16, 2003 8:18 AMTo: Mito Subject: new memberHi all, just want to introduce myself, i'm Barb i suffer from mito for many years now and would have never been diagnosed (have had many misdiagnosises) if it wasn't for my now 6 year old son Matt who suffers from mito, we both have multiple disabilities, I also have RA, degnerative bone disease and severe nerve damage, and Matt (my hero and inspiration)has white and gray matter disease, scoliosis, failure to thrive-fed via g-tube, reflux, mild autism-PDD, epilepsy, adhd. He has come a long way in his short 6 years, he was diagnosed with mito through muscle biopsy at age 3, and has become stronger and stronger, he only uses his wheelchair now if alot of walking is required. He is now included for the 1st time ever at school, he's in 1st grade. He has perty much caught up mentally, but emotionally very delayed. He is very high functioning as it goes for autistics. As his speech is advanced for his age, I am now struggling with speech. Maybe he'll help me with my speech therapy! We have alot of fun in water therapy together, as my husband helps and cheers us on. I have two older children a daughter 20 (who is now complaining of muscle pain) and my son 17 (hearing impaired). They are very sweet and helpful!!! I'd like my daughter to see my neurologist. Any sugesstions here on how i can bring this up to her without scaring her to death???? Looking forward to making friends here!! Barb aka matts_mom96Please contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 17, 2003 Report Share Posted February 17, 2003 Welcome Barb, I am and my son is Cameron age 2. I have three other children, all girls. I can not offer any advice at this time, but want to say welcome. -----Original Message----- Sent: Sunday, February 16, 2003 8:18 AMTo: Mito Subject: new memberHi all, just want to introduce myself, i'm Barb i suffer from mito for many years now and would have never been diagnosed (have had many misdiagnosises) if it wasn't for my now 6 year old son Matt who suffers from mito, we both have multiple disabilities, I also have RA, degnerative bone disease and severe nerve damage, and Matt (my hero and inspiration)has white and gray matter disease, scoliosis, failure to thrive-fed via g-tube, reflux, mild autism-PDD, epilepsy, adhd. He has come a long way in his short 6 years, he was diagnosed with mito through muscle biopsy at age 3, and has become stronger and stronger, he only uses his wheelchair now if alot of walking is required. He is now included for the 1st time ever at school, he's in 1st grade. He has perty much caught up mentally, but emotionally very delayed. He is very high functioning as it goes for autistics. As his speech is advanced for his age, I am now struggling with speech. Maybe he'll help me with my speech therapy! We have alot of fun in water therapy together, as my husband helps and cheers us on. I have two older children a daughter 20 (who is now complaining of muscle pain) and my son 17 (hearing impaired). They are very sweet and helpful!!! I'd like my daughter to see my neurologist. Any sugesstions here on how i can bring this up to her without scaring her to death???? Looking forward to making friends here!! Barb aka matts_mom96Please contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 16, 2004 Report Share Posted January 16, 2004 Is it helping her??? Sure hope so , 's mom Redonna wrote: > > Hi Everyone, > > My name is Redonna, My daughter Haylee was diagnosed with epilepsy > in September of 2002. We have been through the ringer just as all > of you. We are going to be starting the Keto Diet hopefully in Feb > of 2004. I have been in the group learning everything you all of > had to say, and it has been so helpful to me. We have been on 14 > different kinds of medication, been told brain surgery is out > because it would cause her to go blind, we have been through > s' disease with the use of Tegratol and Topamax, and now have > this Vagus Nerve Stimulater in her, and it's not helping, the first > month they put it in, it caused her seizure activity to increase > rather than decrease. We started Haylee on the Adkins diet, just so > she could start getting used to eating different amounts of food and > different kinds of food. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 16, 2004 Report Share Posted January 16, 2004 Is it helping her??? Sure hope so , 's mom Redonna wrote: > > Hi Everyone, > > My name is Redonna, My daughter Haylee was diagnosed with epilepsy > in September of 2002. We have been through the ringer just as all > of you. We are going to be starting the Keto Diet hopefully in Feb > of 2004. I have been in the group learning everything you all of > had to say, and it has been so helpful to me. We have been on 14 > different kinds of medication, been told brain surgery is out > because it would cause her to go blind, we have been through > s' disease with the use of Tegratol and Topamax, and now have > this Vagus Nerve Stimulater in her, and it's not helping, the first > month they put it in, it caused her seizure activity to increase > rather than decrease. We started Haylee on the Adkins diet, just so > she could start getting used to eating different amounts of food and > different kinds of food. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 16, 2004 Report Share Posted January 16, 2004 Is it helping her??? Sure hope so , 's mom Redonna wrote: > > Hi Everyone, > > My name is Redonna, My daughter Haylee was diagnosed with epilepsy > in September of 2002. We have been through the ringer just as all > of you. We are going to be starting the Keto Diet hopefully in Feb > of 2004. I have been in the group learning everything you all of > had to say, and it has been so helpful to me. We have been on 14 > different kinds of medication, been told brain surgery is out > because it would cause her to go blind, we have been through > s' disease with the use of Tegratol and Topamax, and now have > this Vagus Nerve Stimulater in her, and it's not helping, the first > month they put it in, it caused her seizure activity to increase > rather than decrease. We started Haylee on the Adkins diet, just so > she could start getting used to eating different amounts of food and > different kinds of food. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 1, 2004 Report Share Posted May 1, 2004 Hi , Welcome. Our daughter is 9 and has been on some form of the keto diet for over 2 years. Constipation is one of the major side effects of the diet. We give magnesium to prevent constipation. It is a natural alternative. A way to figure out how much magnesium to give is to go according to the amount of calcium recommended daily. We started out at a 2:1 ratio (gave 1/2 the amount of magnesium as the calcium). We went as high as 1:1 (equal calcium and magnesium) but the stool became too loose. We've held steady at giving 3/4 the amount of magnesium. What's wonderful about this besides it being safe and natural is that you can adjust the magnesium according to how your daughter is doing. You may want to check the archives of this group. This has been a highly discussed topic probably since this list was created. Rhonda (mom to Shan, age 9, ketokid over 2 years, doing great) -----Original Message----- Hi I have just joined the group and thought I would introduce myself. We are in the UK taking part in trials on the MCT Ketogenic Diet which isn't as strict as the Ketogenic Diet, I believe. We have been on it 10 weeks now and we have seen a dramatic improvement in my daughter although the seizures are much improved we are still having between 2-5 a day, recovery alot quicker and less incontinence which makes life so much easier, but the fact that she is so much more with it is great (possible reduction of background seizures). She is just about to turn 16 so considered a little old to start, but never mind, and she is diagnosed with Lennox Gastaut Syndrome. The medication she is on is Lamictal, topiramate and clobazam. Unlike in the US we don't have to starve before starting the diet or have a hosptial stay, we just start so I am unsure of the benefits that has, also the MCT diet is based around oils, which are incorporated into each meal as gravy or drinks etc, the oil is suspended in a white liquid which makes it quite versatile. We have though suffered constipation and many problems with school and respite whom don't seem to take the diet seriously enough as well as family who believed it was a fad diet. So testing times. Other than that my daughter is been fab about her special diet and appears not to be bothered what everyone else is eating which is great. Anyway glad to have found this site and look forward to all the sharing of information Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 1, 2004 Report Share Posted May 1, 2004 Hi , Welcome. Our daughter is 9 and has been on some form of the keto diet for over 2 years. Constipation is one of the major side effects of the diet. We give magnesium to prevent constipation. It is a natural alternative. A way to figure out how much magnesium to give is to go according to the amount of calcium recommended daily. We started out at a 2:1 ratio (gave 1/2 the amount of magnesium as the calcium). We went as high as 1:1 (equal calcium and magnesium) but the stool became too loose. We've held steady at giving 3/4 the amount of magnesium. What's wonderful about this besides it being safe and natural is that you can adjust the magnesium according to how your daughter is doing. You may want to check the archives of this group. This has been a highly discussed topic probably since this list was created. Rhonda (mom to Shan, age 9, ketokid over 2 years, doing great) -----Original Message----- Hi I have just joined the group and thought I would introduce myself. We are in the UK taking part in trials on the MCT Ketogenic Diet which isn't as strict as the Ketogenic Diet, I believe. We have been on it 10 weeks now and we have seen a dramatic improvement in my daughter although the seizures are much improved we are still having between 2-5 a day, recovery alot quicker and less incontinence which makes life so much easier, but the fact that she is so much more with it is great (possible reduction of background seizures). She is just about to turn 16 so considered a little old to start, but never mind, and she is diagnosed with Lennox Gastaut Syndrome. The medication she is on is Lamictal, topiramate and clobazam. Unlike in the US we don't have to starve before starting the diet or have a hosptial stay, we just start so I am unsure of the benefits that has, also the MCT diet is based around oils, which are incorporated into each meal as gravy or drinks etc, the oil is suspended in a white liquid which makes it quite versatile. We have though suffered constipation and many problems with school and respite whom don't seem to take the diet seriously enough as well as family who believed it was a fad diet. So testing times. Other than that my daughter is been fab about her special diet and appears not to be bothered what everyone else is eating which is great. Anyway glad to have found this site and look forward to all the sharing of information Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 2, 2004 Report Share Posted May 2, 2004 Thanks for the reply When you say some kind of Ketogenic Diet, what do you mean and have you had problems with constipation on and off for the whole two years. I was expecting it just in the early stages, we are using lactulose, how does magnesium work. Sorry so many questions (normally do much of the research myself but life is rather hectic at the moment)the diet is still new and we don't realy have anyone to ask as of the two dieticians one is on maternity and the other off sick following an operation, our specialist doesn't believe in anything alternative so we do feel very much on our own. Anyway thanks for any info Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 2, 2004 Report Share Posted May 2, 2004 Thanks for the reply When you say some kind of Ketogenic Diet, what do you mean and have you had problems with constipation on and off for the whole two years. I was expecting it just in the early stages, we are using lactulose, how does magnesium work. Sorry so many questions (normally do much of the research myself but life is rather hectic at the moment)the diet is still new and we don't realy have anyone to ask as of the two dieticians one is on maternity and the other off sick following an operation, our specialist doesn't believe in anything alternative so we do feel very much on our own. Anyway thanks for any info Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 2, 2004 Report Share Posted May 2, 2004 , What I mean by " some form of the keto diet " is that our daughter started out on the traditional diet at a 4:1 ratio. Over the 2 years we have weaned her down. She presently is at a .8:1 ratio. She is now more Atkins than Keto. We are giving her a high protein with about 20g carbs per day. We still measure her food. We have not been successful at weaning her off the diet (tried twice). She does best with low ketones. For the past 6-8 months her ratio had been 1:1 and only recently did we lower her ratio to .8 due to producing high ketones (caused her to have an awake seizure which she hasn't had in over 2 years). I'm not an expert at explaining magnesium. There are some posts in the archives that explains it nicely (if you can find them----probably under constipation). Our daughter has not had problems with constipation since we started her on extra magnesium. We've kept her on it the entire time to prevent constipation. It will not hurt her. Magnesium is used to treat constipation. A brand name in the U.S. is called Milk of Magnesium. Others on this list have explained that it naturally helps a person to relax along with treating constipation. That it helps children to relax their muscles is good for those with epilepsy. Magnesium is something our bodies need and those on the keto diet need to make sure that their children are getting enough. A side effect to too much magnesium is very lose stool. That's about the extent of my ability to explain it. Perhaps Patti, one of our veteran members, will jump in and explain it better if she sees this post. Rhonda Re: new member Thanks for the reply When you say some kind of Ketogenic Diet, what do you mean and have you had problems with constipation on and off for the whole two years. I was expecting it just in the early stages, we are using lactulose, how does magnesium work. Sorry so many questions (normally do much of the research myself but life is rather hectic at the moment)the diet is still new and we don't realy have anyone to ask as of the two dieticians one is on maternity and the other off sick following an operation, our specialist doesn't believe in anything alternative so we do feel very much on our own. Anyway thanks for any info Quote Link to comment Share on other sites More sharing options...
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