Guest guest Posted January 1, 2000 Report Share Posted January 1, 2000 Hello Robyn- Welcome to the list! My name is and I'm a 27 yr old sahm. My dh, and I have been married for 6.5 yrs (happily I might add!) We have 3 kids; (6), (5) and Katelyn (20 mo). We are also expecting another in Aug., though I am having extreme difficulties with bleeding and low progesterone output. Right now the baby appears to be fine, but we're not quite out of the woods yet. I never nursed my 1st, my 2nd nursed until 10 mo old, and is still nursing, though I'm in the process of nursing her due to our current unborn's health conditions. (Kinda sad about that...) I wish I could offer something on ttc. My period started on it's own when was 1, though we didn't ttc until Nov., which we seem to have accomplished in 1 try- wow. I'm sure you'll enjoy this list, it's filled with a lot of GREAT people! Keep in touch- S. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 29, 2000 Report Share Posted February 29, 2000 Sharon- Welcome, welcome, welcome! I applaud your commitment to breastfeed! My name is and I'm a happily married SAHM to 3 kids. 7, 5, and Katelyn 22 months. I am still nursing my 22 month old; and if you had told me when was a month old that I would still be nursing when she's almost 2-- I would've thought you were crazy!! Looking forward to hearing from you S. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 29, 2000 Report Share Posted February 29, 2000 well hello..wow 22 months that is amazing..I plan to breastfeed atleast 12 months...I think it is such a great thing..i think god gave us breasts so why not use them...What is hte 22 month olds name? Hope to hear from you Sharon and is >From: jsachieve@... >Reply-To: breastfeedingonelist >To: breastfeedingonelist >Subject: Re: New Member >Date: Tue, 29 Feb 2000 16:58:34 EST >MIME-Version: 1.0 >Received: from [208.50.144.72] by hotmail.com (3.2) with ESMTP id >MHotMailBA858CEB0085D82197B7D032904832648; Tue Feb 29 14:02:45 2000 >Received: from [10.1.10.35] by fj. with NNFMP; 29 Feb 2000 >22:00:38 -0000 >Received: (qmail 3338 invoked from network); 29 Feb 2000 21:58:39 -0000 >Received: from unknown (10.1.10.27) by m1.onelist.org with QMQP; 29 Feb >2000 21:58:39 -0000 >Received: from unknown (HELO imo-d08.mx.aol.com) (205.188.157.40) by >mta2.onelist.org with SMTP; 29 Feb 2000 21:58:38 -0000 >Received: from Jsachieve@... by imo-d08.mx.aol.com (mail_out_v25.3.) id >h.ea.27213bb (3931) for <breastfeedingonelist>; Tue, 29 Feb 2000 >16:58:34 -0500 (EST) >From sentto-7092-23529-sharon_v Tue Feb 29 14:07:15 2000 >X-eGroups-Return: >sentto-7092-23529-sharon_v=hotmail.comreturns (DOT) onelist.com >Message-ID: >X-Mailer: AOL 5.0 for Windows sub 67 >Mailing-List: list breastfeedingonelist; contact >breastfeeding-owneronelist >Delivered-To: mailing list breastfeedingonelist >Precedence: bulk >List-Unsubscribe: <mailto:breastfeeding-unsubscribeonelist> >X-eGroups-From: Jsachieve@... > >From: jsachieve@... > >Sharon- > > Welcome, welcome, welcome! I applaud your commitment to breastfeed! My >name is and I'm a happily married SAHM to 3 kids. 7, > >5, and Katelyn 22 months. I am still nursing my 22 month old; and if you >had >told me when was a month old that I would still be nursing when she's >almost 2-- I would've thought you were crazy!! Looking forward to hearing >from you > > S. > >------------------------------------------------------------------------ >What Your Home Is Worth? Find Out Instantly! >http://click./1/1584/0/_/410002/_/951861540/ >------------------------------------------------------------------------ > >Give the Gift of Life Breastfeed! >http://www.lactivist.com > ______________________________________________________ Get Your Private, Free Email at http://www.hotmail.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 29, 2000 Report Share Posted February 29, 2000 Breastfeeding is going excellent..I luv it...It is great to know that I am doing something good for my daughter... Thanxs for the offer! Sharon and is >From: sept9mom@... >Reply-To: breastfeedingonelist >To: breastfeedingonelist >Subject: Re: New Member >Date: Tue, 29 Feb 2000 13:41:49 EST >MIME-Version: 1.0 >Received: from [208.48.218.21] by hotmail.com (3.2) with ESMTP id >MHotMailBA855BC0004FD82197E9D030DA159621300; Tue Feb 29 10:50:32 2000 >Received: from [10.1.10.37] by ch. with NNFMP; 29 Feb 2000 >18:42:17 -0000 >Received: (qmail 13146 invoked from network); 29 Feb 2000 18:41:52 -0000 >Received: from unknown (10.1.10.26) by m3.onelist.org with QMQP; 29 Feb >2000 18:41:52 -0000 >Received: from unknown (HELO imo11.mx.aol.com) (152.163.225.1) by >mta1.onelist.com with SMTP; 29 Feb 2000 18:41:52 -0000 >Received: from Sept9mom@... by imo11.mx.aol.com (mail_out_v25.3.) id >h.fb.2bb085a (3970) for <breastfeedingonelist>; Tue, 29 Feb 2000 >13:41:49 -0500 (EST) >From sentto-7092-23526-sharon_v Tue Feb 29 10:51:41 2000 >X-eGroups-Return: >sentto-7092-23526-sharon_v=hotmail.comreturns (DOT) onelist.com >Message-ID: >X-Mailer: AOL 5.0 for Windows sub 68 >Mailing-List: list breastfeedingonelist; contact >breastfeeding-owneronelist >Delivered-To: mailing list breastfeedingonelist >Precedence: bulk >List-Unsubscribe: <mailto:breastfeeding-unsubscribeonelist> >X-eGroups-From: Sept9mom@... > >From: sept9mom@... > > > >Welcome Sharon, > I am Rhonda (33) married for 16 years (17 in March!!) to my wonderful >hubby >we have five girls ages 13 11 08 06 and 5 3/4 months, I am a SAHM. >Congratulations on the birth of your baby !!!!! How is breastfeeding going >for you? If you have any questions or concerns feel free to ask anything, >there are a lot of wonderful ladies here!!!! > >Rhonda, >Mom to Five girls > >------------------------------------------------------------------------ >GET A NEXTCARD VISA, in 30 seconds! Get rates as low as 2.9% >Intro or 9.9% Fixed APR and no hidden fees. Apply NOW! >http://click./1/915/0/_/410002/_/951849713/ >------------------------------------------------------------------------ > >Give the Gift of Life Breastfeed! >http://www.lactivist.com > ______________________________________________________ Get Your Private, Free Email at http://www.hotmail.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 12, 2001 Report Share Posted April 12, 2001 Hi Larry, Welcome and congratulations on your surgery date. My surgeon said it was ok for me to swim after 4 weeks. Swimming has helped alot in my weightloss. I would still ask your surgeon, because everyone surgeon has different rules, and I did not have Dr. Reines. Take Care > Hi. My name is Larry, I am new to this group. I've been a member of the main OSSG list for some time now. > > My surgery is going to be on May 31, at Newton Wellesley, by Dr. Reines. > > My question: In one of the posts someone mentioned swimming... does anyone know how long after an open RNY you can go into the water? I'll ask the Doc when I see him for my Pre OP visit but am curious if anyone addressed this yet. > > Larry Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 12, 2001 Report Share Posted April 12, 2001 Welcome Larry I hope you rec'd your swimming answer but from what I've read 4 weeks sounds about right. I think the main concern is having your scar healed .. on the outside .. and to avoid doing the butterfly stroke .. anything that might cause you an ouchie. Good luck! Lyssa Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 13, 2001 Report Share Posted May 13, 2001 Hi Viola... Welcome to the group...My surgery is scheduled for August 21, at NWH with Dr Reines....Hope to see you at Tuesdays meeting.... Jane Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 26, 2002 Report Share Posted July 26, 2002 Hi sherri.actually I’ve been a member since I got out from the hospital but it affected me in such a desperate way when I read e-mails such as flares and when the disease comes back to people, so my husband asked me to lie low from the group a little but when I read about the girl I was so sad and feel like I need to say something but now I am back with the group. I am doing good right now, back almost to normal although I am still in medications. By the way I am from Anaheim,CA and just good attitude coz it really help me a lot to be back again with my normal self. Best Regards , Arlene Latayan Home (714)956-1303 Cell mikcababes@... arlenelatayan@... New Member Hi, I have joined this group and was told about it from someone on another group and she said this group would be good us. Here is a little about us. My three year old was diagnosed with mixed connective tissue disease, her presenting diseases are lupus, dermatomyositis,and scleroderma. She has been sick for about a year now. She is on methotrexate and prednisone. She has been on these for about three months and now they want to start her on IVIG. This is suppose to cost 10,000 dollars each time she recieves it so we are waiting on insurance to aprrove it. I am hoping to meet others that can relate with these diseases and meds etc. My daughter is my world, I have five children and this is so hard, I just would like to find out all I can, so I can help my daughter. Thank you all. Sandy and Madison Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 30, 2003 Report Share Posted July 30, 2003 Hi Patti, Madison does have a bit of reflux, which I believe is due to her seizure meds. Every time we increase those the reflux worsens. We already do high fats, probably no where near the amounts of fats for the diet. We pretty much add tbsp or two of oil, butter, cheese, or whipping cream to all of her meals for calorie boosting! Thanks for all of the tips. Will the book explain to me what is okay and what is not okay to eat? I have read some emails about lotions etc, where do I start educating myself about all of this stuff. When Madison is admitted into the hospital, I want to be as informed as I can be. I am sure it is going to be overwhelming at the beginning, so I want to be able to learn this stuff before it actually starts happening. I would also be interested to know what you and others feel has been the most challenging aspect of this diet. Maybe something that you did not realize when you made the decision to begin the diet! When you get a chance what is the SCDiet? _____ From: Patti Sent: Wednesday, July 30, 2003 6:25 PM To: ketogenic Subject: Re: New Member , My daughter doesn't chew well either..... so I've had to puree or mash almost everything. I don't know how I could live without my Oskar Jr. mini food processer. Katera likes pretty uniform consistency. I made a lot of little quiche or custard-type meals with egg and mashed cooked veggies, or canned pumpkin, cream, butter or oil. These can be all-in-one meals...... all the ingredients blended into one dish, cooked together.... which is helpful because then each bite is at pretty much the right ratio, so no worries if you can't get them to take the entire meal in one sitting. If I were you, I'd start cutting back on carbs now, too...... especially refined flour and other grain-based carbs. You can start getting her used to the cream and increasing other fats, mayo, oils, etc. in the two or three weeks prior to initiation. One thing..... acid reflux is a common problem on the diet. I see she's already taking Pepcid and Prilosec...... so does this mean she already has trouble with reflux? This could get worse on the diet, if so..... especially if they are starting her at a high ratio. Patti, mom to Katera, age 6 (almost 7), who lost her first top front tooth today..... former Keto Kid for over 2 years, currently on the SCDiet and doing better. We are thinking of starting the diet in Sept with my two year old daughter. We live in Richmond, Virginia. My daughter has a diagnosis of Lissencephaly and has been on seizure meds since she was three months old. We have tried a multitude of meds. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 30, 2003 Report Share Posted July 30, 2003 , Please read through the " files " section at the website. Go to: http://groups.yahoo.com/group/ketogenic .....be sure to sign in, then click on the files link that's in the menu bar on the left side. If you have time, you might want to read back through some of the archives. You'll find them in a kind of rectangular " grid " type thing in the middle bottom of the home page, with numbers listed for each month for the past couple of years. That tells how many messages were posted for each month, but if you click on the number, it'll take you to a complete archive listing of all of those messages, browse through the subject lines for things that seem relevant. There is also a " search " feature.... though I think it only searches through the subject lines, not the entire message. (Another reason for us all to make sure our subject lines match what we're writing!) There really isn't a list of " allowed " or " disallowed " foods..... almost anything can theoretically be calculated into a meal, as long as your numbers for protein, fat and carb all come out right. You'll just find that certain food choices make more sense...... for example, the veggies and fruits that are low on the glycemic index will tend to give you more total food volume. Grain-based carb sources will give the least volume, and in my own personal experience, are best avoided. Processed foods, nitrites, trans-fats (hydrogenated oils) and aspartame (Nutrasweet) are best avoided.... again, my own personal opinion. The mealplanner program is really essential, in my opinion, though most of us have started out with meals pre-planned by our dieticians. The thing to look for in lotions and shampoos, etc. is an ingredient called " sorbitol " , which is a form of sugar that I guess can be absorbed through the skin. I hope you don't have any increased problems with reflux..... but it's pretty common. Digestive enzymes helped my daughter.... we did try Priolosec but it didn't help a lot and I was concerned that it wasn't the optimal thing to be giving if I wanted good nutrient absorbtion going on, since the acid blocking effect somewhat inhibits normal digestion, according to my naturopath. We went to the enzymes and lowered her ratio and had no more troubles. In my opinion, the most challenging aspect of the diet overall was weighing everything and making each meal individually..... and not being able to go anywhere without packing meals in advance. In the first six months, our greatest challenge was Katera getting overly ketotic and dehydrated..... and having to keep lowering the ratio so she didn't feel so bad. Posting to you privately about the SCDiet. Patti RE: New Member Hi Patti, Madison does have a bit of reflux, which I believe is due to her seizure meds. Every time we increase those the reflux worsens. We already do high fats, probably no where near the amounts of fats for the diet. We pretty much add tbsp or two of oil, butter, cheese, or whipping cream to all of her meals for calorie boosting! Thanks for all of the tips. Will the book explain to me what is okay and what is not okay to eat? I have read some emails about lotions etc, where do I start educating myself about all of this stuff. When Madison is admitted into the hospital, I want to be as informed as I can be. I am sure it is going to be overwhelming at the beginning, so I want to be able to learn this stuff before it actually starts happening. I would also be interested to know what you and others feel has been the most challenging aspect of this diet. Maybe something that you did not realize when you made the decision to begin the diet! When you get a chance what is the SCDiet? _____ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 7, 2003 Report Share Posted November 7, 2003 Welcome, ! I have two friends who have children with autism. They have been my biggest supporters since my daughter was diagnosed with epilepsy a year ago August. I have learned a lot about life from them. Through one of them, I met another parent of a child with autism. We live in a fairly small town. I don't know of any other children here with epilepsy, at least not with uncontrolled epilepsy like my daughter had. I am inspsired by your zeal to educate yourself about your daughter's condition, to a depth greater than is available through most medical practitioners. It may be more common to go the other way, but your going back to school after some real life experience likely gave you a definite advantage in your ability to put all the pieces together. It is certainly evident from your writing that you learned something worthwhile! What did you get your master's in? My guesses would be molecular biology or biochemistry. My undergraduate degree is in clinical medical science with majors in biochemistry and microbiology. I worked in various medical situations before moving to the town where I now live. Interestingly enough, while I was doing my hospital clinical experience in college, I did my neurology module on epilepsy, with emphasis on various treatment methods. Little did I know...! Although that was several years ago, what I learned has held me in good stead, if for no other reason, I know some of the more obscure questions to ask. Anyway... on to your questions. I doubt that biotinidase inhibition by Depakote is common knowledge among most neurologists. We were told (well, actually, I asked) about the side effects of Depakote when we started on it. I had read a lot about them, including the hair loss. Our daughter began to lose her hair after about a month on the drug. It became worse until it was falling out by the handful. Finally, my HAIRDRESSER told me to start giving her biotin. Then I started doing some research and called some of my former colleagues and discovered the same thing that you describe. I started giving her biotin (600mcg. daily--200% RDA) and after a few weeks, her hair stopped falling out. She had no new regrowth, though, UNITL we stopped Depakote and started the diet. After she had been on the diet for a month, we noticed LOTS of new, little bitty hairs growing back in. Now they are about 1-1.5 inches long. I haven't been giving her biotin since we started the diet because what I was giving her was compounded with starch...a no- no on the diet, unless you use some of your carb alottment. I haven't been able to find a source of biotin that is carb-free. If you know of one, would you please post it?? Her multivitamin does have some...maybe it's been enough. One of the interesting things that I learned while researching the diet it that valproic acid is a direct precursor of octanoic acid, a component of medium chain fatty acids. It is postulated that the metabolic breakdown of mct might be one of the reasons the diet works. That's one of the reasons the MCT version of the diet was created. More dietary mct = more metabolic breakdown products. I wonder if that's where the MCT1 transporter you describe fits in?? I haven't found any studies or literature saying the MCT version works any better (or worse) than the standard version of the diet, though. Our pediatrician ordered " the usual " laboratory tests when our daughter had her first seizure... Complete Chem/Metabolic Panel, CBC, urinalysis, and of course, an EEG. We have a good hospital, but not the capability of doing some of the more obscure tests. Laboratory studies were WNL, but the EEG showed definite generalized seizure activity (subclinical). When we saw our ped. neurologist (in another city) he tested some other blood chemistries and repeated her EEG. It was worse than the first, and they continued to get progressively worse over then next 8 months. Then they levelled out. The ped. neuro ordered routine labs to monitor the medications (CBC, routine chemistries, liver function tests, drug levels. Before starting the diet, our keto neuro ordered a battery of tests that would knock your socks off. Every blood component that I've ever heard of... and then some. Full Hematology studies, yes, with RBC membrane studies and full platelet assessment. They also sent tests away to a reference lab for two WBC markers that indicate rare genetically transmitted epilepsy syndromes. Complete amino acid and organic acid panels, full carnitine panel. All results were within normal limits, except her triglyceride was actually a tad high. Also two of the organic acids were slightly elevated (2-OH isovaleric, phenylacetic, and N-acetlytyrosine) No worry from our team about these. After a month on the diet, we repeated the chemistries and selected amino acids, organic acids and carnitine. All were WNL. Her triglyceride result at that time was essentially the same--lower than previously, and just inside normal limits. At three month intervals, certain laboratory studies will be repeated. What specifically are you looking for with regard to the RBC membrane fatty acid test? Our daughter is absolutely responsive to the diet. She has been seizure free since the beginning. She was taken off Depakote once strong ketosis was achieved in the hospital. Three weeks later, we did a quick wean off her other medication. 8 weeks into the diet, her EEG was normal. That, in itself is amazing, considering what they looked like previously. It's like a bolt of lightning zapped her and put everything back the way it was. Like you, I am dying to know the " inner workings " of the diet, since it's working so well for us. Why does it work for some and not for others? What biochemical or molecular changes occur because of the shift from primary carbohydrate metabolism to essential fat metabolism? Is it the ketones, the fat itself, the metabolites of the fat, or a combination that create the anti-convulsive effect? All have been theorized, but none have been proven. Does the diet actually " repair " something in the neurological system? I hope that helps to answer your questions. It's our experience only. I don't know what other keto teams are doing. I would imagine that s-Hopkins has a pretty comprehensive testing protocol, because the diet " originated " there. They are still recognized as the experts on the use of the diet. I hope others will share their experience with you. And, I hope you will share your research and findings with us. Again, thanks for dropping in! Cammie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 7, 2003 Report Share Posted November 7, 2003 Cammie, Thank you so much for your informative post. My masters is in interdisciplinary studies, and that allowed me to take courses in molecular and cell biology and in neuroscience at the same time. I went through very slowly, only taking one or two courses a semester for credit, and then I also audited about 3 or 4 undergraduate classes at the same time. That way over the four years I " took " the premed classes without the academic pressure. Since I was caregiving my father who had Alzheimers disease out of state, I had to be flexible because of the inevitable emergencies that would turn up. And, I got to take the most interesting undergraduate courses that way. My favorites were the " Seminal Papers in Biology " courses that were taught by different professors sharing their most favorite and pivotal papers. I took that one three times with different profs talking about different subject matter. One of those was all about the little pieces that led up to the discovery of DNA. I loved that class because we talked a lot about the personalities involved and the oopses in the research. The myth that science proceeds infallibly in a straight line was thoroughly done in. But, what really put me under obligation to figure this stuff out was what happened with my father. He was at the latter stages of AD. He was still pretty social, but couldn't remember anything when I started caregiving. He needed aides to give him a bath every day because it was too complicated for him to do. He fell and broke his hip, and in the rehab center, he got into the almost severe stage...losing language, sitting in chair with his eyes closed and mouth open all day long, peeing in the wrong places, wandering at night (and up in the middle of the night!), not recognizing me some of the time. He lived in a retirement home and ate downstairs at dinner and one night when I was there, he came back upstairs and ate some ice cream, and in minutes he thought he was in a courtroom (he was a lawyer), and he thought I was a bailiff or something...He was totally gone to this world. I looked at that ice cream and thought... " Gee, I wonder if the thing about gluten and casein acting like morphine that effects kids with autism (and helped my child get potty trained) would work on Daddy. He sure is acting like he did in the hospital on morphine... " So I put him on the gluten and casein free diet and also started epsom salts baths (something from the autism world that is used to help the sulfur chemistry). Within a month he had regained all sorts of abilities...things that are supposed to be gone forever when they leave. I found if his aides messed up even for one day on the diet or the epsom salts he would go back to where he had been and become terrifically violent and uncooperative (without the epsom salts), or completely zombied with explosive diarrhea (if he got gluten or milk). So, it was HIS improvements that got me to wondering what sulfur does and why it could make him so much better. The same things helped my daughter, but in different ways and helped children with autism, but in different ways. For my daughter and father, the epsom salts baths took care of sensory issues, but my father more than my daughter. By the way, Cammie, I was an English Literature major when I was an undergraduate twenty years earlier. I have found that this background was perfect for what I do now, because it taught me to read and understand literature and look for themes and " character development " and plot....something that seems built into nature's design, but a kind of thinking that science people are rarely encouraged to do, and therefore what they tend quite rarely to practice...looking instead at tiny details without noticing how the details that are from very different lines of research fit into the whole picture. So, since I learned the techno-science at THIS late stage, I've become a bird of a different feather, and very grounded in letting the real world (evidence) drive the science rather than having the scientific world (with its theory and hypothesis and well-rutted models) pretending that it can drive the real world and come up with something neutral of the effect of personality! But I love the whole process. I also didn't mention, I don't think, that I have an internet list called sulfurstories whose mission is to discover new things about how the sulfur chemistry works by having people sharing their experiences with sulfur supplements...observing how many different things explain why what is good for one person is a disaster for another. It stll is mainly populated by parents of children with autism, but we've had a sprinkling of others, whose experience I am really after. Nuff on that. You have had all the sorts of tests I love to review. Would you consider faxing copies of the organic acid profiles, amino acid profiles, red blood cell membrane test, and others of your choice to me? (This is for my eyes only.) I do this all the time with workups on children with autism because I want to learn from what I see by finding patterns that you miss when you only look at one, or look always at things from the same laboratory (as doctors are prone to do) that will use its own reference range (whose legitimacy I have learned to take with a grain of salt). One thing that jumps out, Cammie, is that your child DID have a biotin deficiency marker...the elevated beta-hydroxyisovaleric acid. I bet you a nickel that your doctor said " This isn't biotinidase deficiency because it isn't high enough, " and decided this bit of data should be dismissed, so it is possible the depakote was probably the worst choice he could have made and you got your hair loss to prove it. A careful study of the literature yielded this wisdom. The elevated markers for biotin deficiency in the organic acid profile show up in a particular order with the hydroxyisovaleric acid showing up first, usually. This is probably a good marker for biotin deficiency in maybe the kidneys, but it may not be a good marker for biotin deficiency in the lungs or in the brain. Many studies showed that biotin-responsive conditions in the brain were not always accompanied by the organic acids being off that are typical of biotinidase deficiency. Some of those conditions in the brain needed as high as 100 mg/day of biotin to resolve, but it COULD resolve the problem completely. There is a paper on biotin-responsive dystonia that I think is a must-read for getting this concept, and it is free to download from Pubmed. Brain. 1998 Jul;121 ( Pt 7):1267-79. Biotin-responsive basal ganglia disease: a novel entity. Ozand PT, Gascon GG, Al Essa M, Joshi S, Al Jishi E, Bakheet S, Al Watban J, Al-Kawi MZ, Dabbagh O. One article even said brain deficiencies of biotin may occur earlier than the signs seen in the organic acids. This is not completely spelled out, but it should give us pause before we dismiss a mildly elevated hydroxyisovaleric acid. Something else I'll do is post which medicines and other things produce biotin deficiency, and listmates here can see if they are relevant to their own child's history. The big kicker is amoxicillin, which, because resistance has been developing in bacteria because of its overuse, has gone up in recommended dosage in the last ten years from 20mg/kg to 90 mg/kg. I think we are as a culture are killing off the flora we need to make vitamins for us, and forgetting that our flora makes stuff we can't get in sufficient quantity from food. But, doggone it, the QUANTITY that we are supposed to get from our flora has never been measured, so we certainly cannot tell if we are killing enough of these symbiants with antibiotics to put ourselves into serious vitamin deficiency. There is more I want to talk to you about the MCT's, but the MCT1 is a transporter for mono-carboxylases...a totally different MCT. Let me know if you are interested in going to the trouble of faxing your lab reports. It doesn't sound like you had the same pattern as my daughter in RBC membrane test....Her fatty acids were all over the map from five times less than normal to five times higher, so lots of L's and H's. For anyone reading this out of context, my daughter never had epilepsy, but had gross motor delay and sensory problems and is not on the ketogenic diet. I'm not finished with this, but my family is trying to pry me away, but I'll ahead and send this part. ..At 07:23 PM 11/7/2003 +0000, you wrote:Before starting the diet, our keto neuro ordered a battery of tests >that would knock your socks off. Every blood component that I've >ever heard of... and then some. Full Hematology studies, yes, with >RBC membrane studies and full platelet assessment. They also sent >tests away to a reference lab for two WBC markers that indicate rare >genetically transmitted epilepsy syndromes. Complete amino acid and >organic acid panels, full carnitine panel. All results were within >normal limits, except her triglyceride was actually a tad high. Also >two of the organic acids were slightly elevated (2-OH isovaleric, >phenylacetic, and N-acetlytyrosine) No worry from our team about >these. After a month on the diet, we repeated the chemistries and >selected amino acids, organic acids and carnitine. All were WNL. >Her triglyceride result at that time was essentially the same--lower >than previously, and just inside normal limits. At three month >intervals, certain laboratory studies will be repeated. What >specifically are you looking for with regard to the RBC membrane >fatty acid test? > >Cammie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 10, 2003 Report Share Posted November 10, 2003 Hi susan i'am Lourdes i don't post much but i read the all the mails your info is very interesting. i was wondering if its only for children with autism, & behavoir problems. for the epsom salt. we have a very developmentally delayed 3yo girl. non verbal or walking. only dx is seizures with global delays. she does had microcephally. but can't find anything else wrong with her. all testing comes back normal. was wondering if this bath would help her. do you have any ideas? Thanks Lourdes mom to Hannah New member Greetings! I'm joining the list to learn from you, if that's OK. I have been on the internet for about 8 years because my daughter had developmental delays (gross motor issues). We think that may have developed because of a defect in a vitamin transporter. ( A transporter is a molecule that spans across the cell membrane and helps the cell import specific substances it needs, but in a very regulated fashion.) Back when I first got on the internet, I learned so many amazing things from listmates on the St. s list for Autism and Developmental Delay that really turned my daughter around, but I was fascinated by what did what to help her. Inspired by that, I went back to graduate school and got a masters degree to get the background to understand what I was hearing about and what I was reading in the medical literature. Perhaps it is a bit backwards to go from real life to academics, but what I learned in graduate school was imminently practical. Anyway, while there, I noticed a gulf between what I was learning in school and what I had already learned from listmate's stories, from autism research, and from two years of searching through medline for insights about medical problems in my family. (My father had Alzheimers.) I became committed to understanding a gaping hole in the curriculum, which was the function of the sulfur chemistry as a system in humans. I have been hearing from autism listmates about the ketogenic diet for years, but lately, a post from a listmate whose child has been on the ketogenic diet got me wondering if the ketogenic diet might change things related to the transporter I think might be " broken " in my daughter. This transporter (called the SMVT) was only discovered a few years ago, but it transports three vitamins: biotin, pantothenic acid and alpha lipoic acid. My daughter had deficiency signs of all these things when she was little before we supplemented them. She never had seizures, as far as I can tell unless bruxism is related to seizure activity. Just from a quick glance at the archives, I saw reported that the ketogenic diet sometimes induces hair loss, which has been recognized here as a sign of biotin deficiency, with the proof coming when biotin supplementation reversed the problem. Has there been a dose set by experience here that works the best, and a dose that has been found to be too high for one reason or another? Pantothenic acid is B5, and it is joined with cysteine (sulfur) to make pantetheine. Pantetheine is then activated to turn it into Coenzyme A. CoA is very important cofactor for fatty acid metabolism and for basic energetics in the cell as well as for something called acetylation. Sometimes teeth grinding (bruxism) responds to pantothenic acid, and I thought I saw mention of that problem in the archives here. My daughter used to grind her teeth at night terribly when she was little, but never in the daytime. The third cargo of this shared transporter is lipoic acid, which also contains sulfur, and it may have a lot to do with the way the brain organizes our movement so that we move one side of our bodies then the other, like in walking or crawling. My daughter had trouble with that when she was little, and she never crawled. It is obvious that this particular transporter has a lot to do with sulfur regulation, but things listmates have said make me curious about this transporter's relationship to things that happen on the ketogenic diet. Biotin deficiency itself can cause seizures, and I was just wondering if it was the experience of listmates that their doctors explored biotin deficiency as a cause of seizures before prescribing anti-epileptic drugs or before trying this diet? Did doctors prescribing valproic acid mention that it depletes biotin and hampers the enzyme biotinidase, which helps your body use both biotin and lipoic acid? I'm just trying to see if this relationship is common knowledge among the doctors treating patients with valproic acid. I would love to hear listmate experiences with any of this territory. I will try to get through the archives to see if I can find these issues mentioned there, but I find the interface to the archives to be difficult to navigate in yahoogroups, so I'd rather just ask, if that's ok. An article I found recently said that the ketogenic diet upregulates a different transporter (MCT1) that biotin shares with many other molecules, and that's one reason I wanted to come here and talk with you a little. May I ask about testing that is being used in this corner of experience? Some tests used in autism circles are the organic acid test, the plasma and urinary amino acid tests, the red blood cell membrane fatty acid test, and stool tests, to see what is happening with the flora. The flora makes the vitamins that the SMVT transporter gets across membranes, and I find that relationship fascinating. Are these same tests used with the ketogenic diet? I would be especially interested to find out if anyone responsive to the ketogenic diet has had the red blood cell membrane fatty acid test either before or after starting the diet. Well, that's certainly enough visiting for an introduction. I hope you don't mind my being here and asking about what you've learned from your experience! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 11, 2003 Report Share Posted November 11, 2003 , I have pages and pages of lab results from pre-diet through 1 month post diet. I don't have access to a fax machine. Both my husband and I feel uncomfortable sharing personal information with someone we haven't met. Thank you for your offer, though. You do seem to have a wealth of knowledge. As I said, all of her results were normal, with the exception of those that I listed. At 1 month post diet, all the slightly elevated acids were at good normal levels, by any lab's reference ranges. Her RBC membrane fatty acids were very normal pre-diet and have not been repeated. If I remember correctly, they will be repeated some point (6 or 12 months ?) I probably wasn't very clear on the Depakote/hair loss experience we had. Actually the neurologist on our keto team did tell us that the increased OHisovaleric acid was likely due to Depakote. She is not the one who prescribed Depakote. That was our " local " pediatric neurologist. He did tell us that hair loss was a reported side effect, but nothing " deeper " than that. The keto team neuro wasn't overly concerned because the result was very slightly elevated and she planned to take our daughter off Depakote during initiation of the diet. She suggested that we supplelment with biotin and selenium, but by that time I was already doing it. It would have been interesting to see what her level was before starting the supplements. I still supplement selenium. I'm looking for a biotin product that doesn't have carbs. However, her hair is growing back nicely. It's also growing in curly. My sister in law lost all of her hair during chemotherapy. When it grew back in it was also very curly. Do you have any thoughts about what might cause that? I SOOOOO agree with you about amoxicillin... and several other antibiotics on the " top ten " list of overprescribing. While working as a microbiologist, I watched doctors prescribe antibiotics like aspirin. Got a cold? Oh, yes, here take this. I have so many pet peeves about antibiotics that I could write a book. They are wonderful, actually lifesaving drugs, when used appropriately. Many of us predicted that we would be right where we are now with antibiotic resistance. Killing the normal flora in the gut is only the tip of the iceberg, but it IS important. I have never heard a physician suggest adding back microbes after completing a course of antibiotics, much less supplementing while on them. Most physicians weren't even telling their patients to FINISH the prescription... the number two cause of resistant organisms. (Luckily, good pharmacies do, though) Most docs didn't wait for the results of a sensitivity panel to see which drug(s) would actually work best. They paid more attention to the pharmaceurical detail people than the culture reports. We rarely did confirmatory Strep tests... they just prescribed amoxicillin or worse, a high powered third generation cephaolsporin , " just in case " . " If Ãt isn't Strep, the antibiotic won't hurt you. Let's just play it 'safe' " Yeah, right! I don't have any hard evidence in my hands but my training and experience tell me that antibiotics could easily cause problems with the keto diet because of improper absorption, not to mention acid-base balance. Heck, they cause GI problems in about a third of the people who take them who aren't on the diet. O.K. I've ranted and raved long enough. It is nice to have you here... I'm fascinated with the sulfur/epsom salt discussions. Something totally new for me. I only remember my mom giving us a glass of warm water with ES dissolved in it for constipation. Tasted terrible but better than Milk of Mag!! Cammie > > You have had all the sorts of tests I love to review. Would you consider > faxing copies of the organic acid profiles, amino acid profiles, red blood > cell membrane test, and others of your choice to me? (This is for my eyes > only.) I do this all the time with workups on children with autism because > I want to learn from what I see by finding patterns that you miss when you > only look at one, or look always at things from the same laboratory (as > doctors are prone to do) that will use its own reference range (whose > legitimacy I have learned to take with a grain of salt). > > One thing that jumps out, Cammie, is that your child DID have a biotin > deficiency marker...the elevated beta-hydroxyisovaleric acid. I bet you a > nickel that your doctor said " This isn't biotinidase deficiency because it > isn't high enough, " and decided this bit of data should be dismissed, so it > is possible the depakote was probably the worst choice he could have made > and you got your hair loss to prove it. The big kicker is amoxicillin, which, because > resistance has been developing in bacteria because of its overuse, has gone > up in recommended dosage in the last ten years from 20mg/kg to 90 mg/kg. I > think we are as a culture are killing off the flora we need to make > vitamins for us, and forgetting that our flora makes stuff we can't get in > sufficient quantity from food. > > There is more I want to talk to you about the MCT's, but the MCT1 is a > transporter for mono-carboxylases...a totally different MCT. > > Let me know if you are interested in going to the trouble of faxing your > lab reports. It doesn't sound like you had the same pattern as my daughter > in RBC membrane test....Her fatty acids were all over the map from five > times less than normal to five times higher, so lots of L's and H's. > >> > > > > > > . Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 11, 2003 Report Share Posted November 11, 2003 Am I crazy.....or do epsom salts contain magnesium?? Owens wrote: > Lourdes, > > I'd certainly try it...Maybe start with about a quarter of a cup to a > bath > of water....twenty minutes...and see if it changes anything. > > When I tried it, my daughter didn't have any of the issues that the > kids > with autism had except for sensory defensiveness, and what improved in > her > was something that wasn't a problem in those with autism but was for > her...very slowed motor movement. The effects were very > rapid....within an > hour or so....and so astonishing that both her OT and I sort of gawked > to > see the change. > > Do you know proportionately what regions of the brain are affected by > this > microcephally?. Has she been microcephallic since birth? I know > someone at > Harvard who has been studying the macrocephally that can develop in > autism, > and she has found that there are very region-specific differences. > She > might be a good person for a consult because of her rare expertise. > > If you'd like to write me offlist with more " history " on Hannah, I'll > see > if I know anything that might be useful to you...no promises, but you > never > know. > > What has been ruled out, and what testing has been done? > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 11, 2003 Report Share Posted November 11, 2003 , You are quite sane. Epsom salts ARE magnesium sulfate. Does that mean something special to you or to things ketogenic? At 09:59 AM 11/11/2003 -0400, you wrote: >Am I crazy.....or do epsom salts contain magnesium?? > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 12, 2003 Report Share Posted November 12, 2003 Owens wrote: > , > > You are quite sane. Epsom salts ARE magnesium sulfate. Does that > mean > something special to you or to things ketogenic? Well,. yes and no, quite honestly Ketogenically speaking mag is very important on diet (although many keto centres don't seem to recognize that) to help with calcium absorption. Calcium is an issue on the diet both because you need to supplement adequate (you won't get sufficient amounts in the food) and since kidney stones can be a big issue, the mag will keep the calcium soluable so you pee it out as opposed to it settling into stones. Outside of that, it caught my attention because a friend had just posted me yesterday with info on magnesium (stuff I had seen before but tend to forget). And it certainly fits with your experience with the epsom salts (mag) and your dad. I never knew about mag and the sensory issues though, thats interesting. I will send the mag info in a separate post. Have been trying to follow your conversations but must admit that a lot of it is over my head, even after doing this diet for almost six years. About the growth stuff, my daughter went from around 50th perentile for height and weight pre-diet to around 10th percentile for height and 5th percentile for height to falling off the charts for height. We have finally got her back on to around 5th percentile for height by increasing protien. In the past we had upped protien without any effect on height. But some dieticans believe its the acidity of the diet that affects growth and there is not much to be done about it as long as you are on diet. I know I would be very hesitatant to look at growth hormones as long as she was on diet unless I knew the diet would be life long thing for her, which some days it feels like I use to think problem was just not enough protien, but Jess' experience is not really commesurate with that. And often when we add calories, she puts on the weight without the height, resulting in us cutting the calories again to stop the weight gain. Any ideas?? Just as an aside, Jess had all her vaccinations up to 18 months but none since then. Her first bout of seizures was three weeks after MMR and second bout of seizures was three weeks after 18 month needle. I don't believe they caused her seizures but do think they were likely a trigger and perhaps helped set up her weird seizure pattern - she will go months without seizures, takes them three times a year in specified months and does her own version of status when she has them (40 - 80 in a week pre diet). Thanks Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 21, 2003 Report Share Posted November 21, 2003 Hi Shanon, Congratulations on taking this next step...I hope it will be successful for . The diet can seem overwhelming in the beginning, but hopefully you'll see improvements quickly and that will help get you through the bumpy parts. You are most likely right to think that being able to wean some of the meds will cause good changes in him...that in itself would be reason enough to try the diet. Wishing you all the best. Glenna, mom to Macie, 6 years old, on diet since 10/01 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 14, 2004 Report Share Posted January 14, 2004 Hi, welcome. My daughter is 13 months and I am also a new member to this group. Kristan has been on the diet for almost 5 months and it is doing something for her, she still has a lot of seizures (about 30 a day) but is down from 200! No meds ever worked for her, so initiating the diet is the best thing you can do. Good luck. Satnam, mom to Kristan, 13 months > Hi, > I have been reading posts from this site for 2 weeks ever since we decided to ask our neuro about it. He briefly mentioned it with a " passing eye roll " last year but never again. A brief history on my daughter. She just turned 10 in 2001 when she contracted encephalitis (via mosquito). She was in status epilipiticus (sp!) for 40 minutes. She never had a seizure in her life before. She spent 6 weeks in intensive care, 27 days on a ventilator and 10 days in a coma. As a result she now has what our neuro calls " secondary epilepsy " . We have tried 8 meds (depakote, trileptol, tegretol, dilantin, keppra, topamax, lamictal and klonopin) nothing seems to help.Oh we get the 2 week " honeymoon " but that is it. Hormone changes seem to bring seizures on as well as certain foods (seafood, msg, nitrates) Sorry to ramble......I am seeing the neuro for her 3 month check up and are requesting that he initiate the diet. I have read all the books and have a long list of questions. What I want to know is does anyone else have an older child (mine is now 12 1/2) on the diet and are there any problems and also if anyone is famaliar with Childrens Hospital in Pittsburgh (we live there). We are at our wits end. Our daughter is willing, she keeps telling us that she wants to drive so...Our dr. told us we are low on med choices, that we are running out! She currently takes keppra, lamictal, topamax and klonopin prn...can anyone help or give insight?! > Thanks for letting me ramble. Cassandras mom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 14, 2004 Report Share Posted January 14, 2004 Maybe if you posted your daughter's stats (height, weight, ratio, calories, amount of protien, amount of fluid per day) someone might have some ideas for finetuning Melinda wrote: > Cassandra's mom, > I cried when I read your post because this is our story too. Our > daughter > Mackenzie was 9 in May when she contracted encephalitis and similar > spent 40 > days in ICU and 105 in hospital. (May 2003) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 10, 2004 Report Share Posted March 10, 2004 Welcome to the group! I don't have any info on UD but if you are claustrophobic you can either make an appt at an Open MRI place or you could ask your doctor to prescribe something that might make you a little more relaxed. They will always do it and you just have to have someone pick you up and take you. Keep us posted on what your doctor finds out. I'm sure some of the other ladies with UD can give you their experience and guidance. carol Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 22, 2005 Report Share Posted May 22, 2005 First of all CONGRATS on your new way of life - We've been doing this for about 9 weeks and love how we feel. Be sure and get food you really like - that seems simple, but to try to eat things you do not like is a sure fire way to fail. Get yourself some snacks - the ones recommended by the book - as these will be a life line. Keep some easy and fast available foods around so when hunger strikes you can open the fridge or cabinet and make a healthy choice - this helps so you don't have to fix or cook everything before you can eat. The way we cook is very simple - but we try to add in a "more complex" recipe once a week for variety. Meals you can make in large quantity and have left overs readily available are great too. For Example: I don't mind left over scrambled eggs but hubby hates them as left overs. I keep Skim or FatFree mozzarella cheese sticks on hand - they are handy and quick - easy to grab as you go out the door or come in from work and your hungry - or just have an urge to eat something. Turkey breast from the deli is another staple in our house - we just take a piece and roll it up and eat it - great protein snack. You can even roll it up with a piece of leaf lettuce. I almost hate to mention Nuts as they can be a diet buster for some but it helped us get through the crunchy craving stages - we use almonds, pine nuts, pistachios. So if you buy any be sure to control portions. Lots of fresh veggies you can munch on. or steam to go with a meal. But don't over buy - this is where we had to learn how to shop - we were over buying and throwing out the first week or so. Now we rotate our purchases - we buy some and eat it till it's gone and then the next time we purchase something different. Some items we can purchase in the quantity we want, like green beans but other items like asparagus come in set bundles at our store. W. New Member Hi all My name is . I am just now starting South Beach Diet. I am reading the book and will start it tomorrow... I tried Atkins about a year ago and lasted until lunch..I had a bad headache by then. But this one I think is a lot better. I enjoy eating veggies and I eat eggs for breakfast now... and also I eat lean meats and salmon mostly at night... I'm going to the store this afternoon to get my first weeks stuff. Any tips or advice would be greatly appreciated.. __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 22, 2005 Report Share Posted May 22, 2005 The best advice I can give you: 1. Read and understand the book. Read it a couple of times. 2. Don't expect weight loss to happen quickly - depending on your needed loss and your own bodily characteristics, you may not get to your goal weight for several months or longer. 3. Expect to have a possible rough time for a few days during phase one. It will pass. 4. Did I say read the book? Yes I did. Read it. 5. You've got to WANT to do this. It's a lifestyle change which will improve your overall health and blood chemistry. Remember, weight loss is a side effect of SBD. My wife and I have been eating the South Beach way since August 2003. It's great! Good luck. Chuck New Member Hi all My name is . I am just now starting South Beach Diet. I am reading the book and will start it tomorrow... I tried Atkins about a year ago and lasted until lunch..I had a bad headache by then. But this one I think is a lot better. I enjoy eating veggies and I eat eggs for breakfast now... and also I eat lean meats and salmon mostly at night... I'm going to the store this afternoon to get my first weeks stuff. Any tips or advice would be greatly appreciated.. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 22, 2005 Report Share Posted May 22, 2005 Chuck is absolutely right - you have to want to do this for your health. That is what keeps hubby & I going - the weight loss is a bonus, so to speak. Of course a "healthy" weight is important to one's health too - it's just great that the SBD = health - period - which means healthy weight loss & maintenance Focusing on your health VS. weight loss might be what gets you to stick with this. It's what got us through phase one as it was really rough for me - not cravings, not hunger, but constant headaches. I kept telling myself - I can and will do this; I'll live through this and come out on the other side victorious, with better health. Keep posting and asking for support if you need it - this group is great! Hubby and I didn't join until about our 6th week - boy could I have used some moral support during phase one! Well, besides hubby of course Who had no problems what so ever and he is the one home on disability (I throw that in so you can see that various people react in various ways) New Member Hi all My name is . I am just now starting South Beach Diet. I am reading the book and will start it tomorrow... I tried Atkins about a year ago and lasted until lunch..I had a bad headache by then. But this one I think is a lot better. I enjoy eating veggies and I eat eggs for breakfast now... and also I eat lean meats and salmon mostly at night... I'm going to the store this afternoon to get my first weeks stuff. Any tips or advice would be greatly appreciated.. Reminder: The South Beach Diet is not low-carb. Nor is it low-fat. The South Beach Diet teaches you to rely on the right carbs and the right fats-the good ones - and enables you to live quite happily without the bad carbs and bad fats. For more on this Way Of Eating please read "The South Beach Diet" by Arthur Agatston, MD. ISBN 1-57954-814-8 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 22, 2005 Report Share Posted May 22, 2005 Well just as a heads up chances are you’ll get the SB flu as many of us here call it…usually around day 3-4 where you feel like your sick with the flu…some people get it very mild other not at all and other really get hit with it….I got 2 days of not feeling right with a mild headache so I would say mine was mild….and then I felt actually the best I have felt in years after that and still do….sooo congrats on wanting to make this a new WOE(way of eating) and just ask questions along the way and make sure you check the group files for the updated food lists…there are a few new things added…wooooooo hoooooooo…lol Licienne Be who you are and say what you feel because those who mind don't matter and those who matter don't mind. -Dr. Seuss From: South-Beach-Diet-Getting-It-Right [mailto:South-Beach-Diet-Getting-It-Right ] On Behalf Of SebatoPower Sent: Sunday, May 22, 2005 11:20 AM To: South-Beach-Diet-Getting-It-Right Subject: New Member Hi all My name is . I am just now starting South Beach Diet. I am reading the book and will start it tomorrow... I tried Atkins about a year ago and lasted until lunch..I had a bad headache by then. But this one I think is a lot better. I enjoy eating veggies and I eat eggs for breakfast now... and also I eat lean meats and salmon mostly at night... I'm going to the store this afternoon to get my first weeks stuff. Any tips or advice would be greatly appreciated.. __________________________________________________ Quote Link to comment Share on other sites More sharing options...
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