Guest guest Posted March 12, 2002 Report Share Posted March 12, 2002 Hi Wanda, Acidophilus- It can be found at any drugstore or health food store. It comes in liquid, powder or capsules. Capsules - the quick and easy way to take it several times each day. When I purchase the stuff I look at the back label for the words "billions of active cells". The more the better. It is essential to keep up on taking acidophilus, without it the digestive system gets out of balance, and then you have tremendous problems. The particular probiotic I am using right now says at time of manufacture there were 5 billion active cells made up of several different strains of cultures. I take 2-3 capsules at least 3 times each day. If you begin to get any sign of vaginal yeast infection - you know you are not taking a large enough daily dosage. From what I have learned in this group there are people who can not move without the help of inflammation reducing prednisone. On the other hand if you can make it without, well, from what I've read it's quite damaging to our bodies over the long run. I did very well for about two years on naproxen, then it quite working for me. My recommendation, on the rheumatic.org web site - read the histories, they are very informative from those individuals who have experience and knowledge to pass on to us. Wanda Grimes wrote: Hello folks, I've been lurking for a month or so and am lucky to have found this group. My story begins in November and December of last year, when I had a couple of episodes which apparently were "flares" in my hands (swelling, pain, waking me up at night, aching all day). In fact I had to call my internist on the day after Christmas because I couldn't wait till after New Year's to get something done. In a phone consult, he said maybe this was a one time inflammation which would respond to a round of prednisone. It responded wonderfully (which I read on the Internet could mean that it was RA) and as soon as I stopped taking the prednisone, it came back. After the second try, he sent me to a Rheumatologist. In the meantime I had done "some" research, looking up my symptoms and discovering that the fit was probably RA. I tried the ostrich approach and stopped researching until I went to the Dr. I did order a book from the library which sounded hopeful, "The Road Back." But I didn't read it before I went to the Rheumy. Amazingly (from what I can understand), after he examined me and read the questionnaire I had filled out, he told me about a theory that antiobiotics could in some cases "cure" this disease that I had been so afraid to find out more about. He also said that the docs in his practice had only had marginal success with this treatment, and he discussed methyltrexate. But, he put me on minocycline (100 mg. day for the first week, then 200 mg/day) and 5 mg. of prednisone daily and wants to see me in April. In the meantime, I read Dr. Brown's book, found the website and this group. I haven't had a herx response, but I also hardly have any pain except some odd shooting pains in the wrists, some aching in the left shoulder blade, and some in the right hip. Some of this may be OA too, of course, so I feel that something is working. After reading the book, I realized that I've had symptoms longer than I thought--I just didn't know what they were. I want to thank the group for being there, for giving me lots of info, and for your loving support of each other. I also have a couple of questions. 1. I understand that I need an acidophilis supplement. How do I go about researching this? Are they all the same? I know nothing about this. 2. I am on a low-dose birth control pill, which I understand the minocycline will interfere with. Does anyone have any info on this? I'm thinking about calling my GYN to see about coming off this since it won't do much good for a while anyway. 3. I want to wean off the prednisone, even though I've only been on it since Jan. I'm puffy and starving all the time, and I'd like to see if I can go off this and only take the antiobiotic. In this case, what do you use for pain relief? I'm going to tell the dr. that I'd like to ease off of this (I did go to the healingyou site to see the protocol, but haven't read it all yet). Thanks again for your support, and I hope to give as good as I get! Take care, Wanda Grimes To unsubscribe, email: rheumatic-unsubscribeegroups Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 17, 2003 Report Share Posted May 17, 2003 Hi Lynn, My son is 3.2 and nowhere near reading. He's been in ST since age 2 and has about 30 signs/word approximations. I was wondering, where in MS are you? We are in Cleveland MS. also has hypotonia, but his biggest challenges stem from his global dyspraxia/apraxia. He has been in PT since 18 mo and OT since age 2. He also has some sensory issues, primarily vestibular and proprioceptive (hyposensitive). I've met one other mother from MS from this group--she lives outside of Jxn. We are considering moving there to go to the Magnolia Speech School. Liza [ ] Introduction and question Hi everyone, I am a single mom of a 4 year old boy with Apraxia. He started speech therapy just after his 2 birthday. When I noticed he was making no sounds. It has been a very rough road for us as we have had to fight with his original SLP's because they were not seeing any progress. I think the straw that broke the camels back was when I told them I was going to homeschool him and I got a 45 minute lecture on what a bad parent I was. Thankfully we were soon transferred to a little town in Mississippi, where has a great SLP and has progressed to some coherent speech without his dynavox! They tell me that we still have many years of therapy to go, but it does not look so hopeless now... He also was diagnosed with sensory integration dysfunction, hypotonia, and ADD...so we go to OT as well...And we are trying to get hippo-therapy started... I am almost positive he is reading, but because of the language barrier I can't tell for sure...Does anyone else have this problem??? Thanks for listening Lynn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 17, 2003 Report Share Posted May 17, 2003 Hi Lynn, My son is 2.8 years old and he was diagnosed with dysphragia. I suspect he has ADD and sensory issues also. He's hyperactive, doesn't listen, etc. He has a total of 2 words to his vocab. and uses da or di for everything else. We start therapy in August, ot, st, etc. AT this point, my great hope is that he will learn to talk. I'm not getting anywhere with him by myself. I wonder how much progress parents have made from their therapy start date? I didn't know they give meds for speech disorders. Should I ask my pediatrician for something? Yes, I was also told I was a bad mom, family included. If you stimulated him more, if you paid more attention, etc. Then, they turn around and say, you should wait some kids start speaking at 4! Very nice, but his diagnosis is not this and I can't wait around and lose another year! I have come across some professionals that are so non sympathetic, it blows me away. One doctor said she only wished she could find the problem in a blood test that way she would know what it was! I couldn't believe she was implying she would like to find a Fragile X or something. Then she went on to say that we don't know what is wrong with " these kids " ! And a speech therapist I met once told me that my son was a candidate for YEARS of therapy. When I explained that he understood what I was saying but that he couldn't explain himself, she yelled at me that HE WAS NOT NORMAL! Very frustrating this " beautiful " system. However, you do come across some really great professionals and those are the ones you want to keep your child working with to get him to progress. I feel frustrated also when I try to teach him names of animals and have no idea if he knows them. It's very hard for me to assess what he does and does not understand. Tina >From: " noisii " <noisii@...> >Reply- > >Subject: [ ] Introduction and question >Date: Sat, 17 May 2003 11:28:43 -0000 > >Hi everyone, >I am a single mom of a 4 year old boy with Apraxia. He started >speech therapy just after his 2 birthday. When I noticed he was >making no sounds. It has been a very rough road for us as we have >had to fight with his original SLP's because they were not seeing >any progress. I think the straw that broke the camels back was when >I told them I was going to homeschool him and I got a 45 minute >lecture on what a bad parent I was. >Thankfully we were soon transferred to a little town in Mississippi, >where has a great SLP and has progressed to some coherent >speech without his dynavox! They tell me that we still have many >years of therapy to go, but it does not look so hopeless now... >He also was diagnosed with sensory integration dysfunction, >hypotonia, and ADD...so we go to OT as well...And we are trying to >get hippo-therapy started... > >I am almost positive he is reading, but because of the language >barrier I can't tell for sure...Does anyone else have this problem??? > >Thanks for listening >Lynn > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 17, 2003 Report Share Posted May 17, 2003 To Tina , Let me tell you a story about my son. I too always knew he understood everything we were saying and I always wondered what was going on in that beautiful little head of his. My concerns started when he was about 15 months old (speech delay) and I brought it up at his 18 month check up and was told " wait until his 24 month check up " . In hindsight, I wish I would have had him evaluated at 18 months, but he was my first child and I had no experience, etc... Anyway, he started speech and occupational therpay at 27 months old. At that time he had 10-12 words. He started one Pro-EFA per day on April 10th of this year. Today he has about 200 words. Just this morning we were coloring b/c I am trying to get him to draw a circle. As a reward for his hard work, I got out a sticker book to give him a sticker for doing a " Good Job! " Well, the stickers are all different animals and he was really excited about the stickers. I asked him which one he wanted and he pointed to the cow and said, " Cow. Moo. " I couldn't believe it. Every since he was 2 years old I have been trying to teach him all of the animal sounds with his Fisher Price farmhouse or barn (you know what I mean) and I never knew if he was getting it. So in any event, we went through every animal sticker and he named and made the sound for most if not all of them - sheep, cat, dog, horse, pig, monkey, tiger, zebra, elephant, etc... So, I guess what I'm saying by this long story is that our children are developing this vocabulary all along and they just can't yet express it. That is why I've always been so adamant when an evaluator questions his receptive or cognitive abilities. So, everything you do with your son does make a difference. Don't get discouraged. There is planty you can do as a parent between now and August to help your son. There is plenty of information on the internet. My son loves puzzles, flash cards, and drawing on the chalk board. He really learns alot of words playing with flash cards and puzzlesand when we play with the chalk board. Something else you could do with your son is play with play doh and string wooden beads. Stacking blocks and nesting cups are both good too. Oh, and my son loves to play with shaving cream in the bath tub - a good sensory integration type therapy. You can read alot about the Pro-EFA from this group and also in the book, The LCP Solution, by Dr. Stordy. It is an essential fatty acid nutritional treatment for ADD/ADHD, Dyspraxia, Dyslexia, etc... It not only helps with talking but with attention, focus, behavior, etc... Good luck. You sound like a very concerned and loving mother to me! Re: [ ] Introduction and question Hi Lynn, My son is 2.8 years old and he was diagnosed with dysphragia. I suspect he has ADD and sensory issues also. He's hyperactive, doesn't listen, etc. He has a total of 2 words to his vocab. and uses da or di for everything else. We start therapy in August, ot, st, etc. AT this point, my great hope is that he will learn to talk. I'm not getting anywhere with him by myself. I wonder how much progress parents have made from their therapy start date? I didn't know they give meds for speech disorders. Should I ask my pediatrician for something? Yes, I was also told I was a bad mom, family included. If you stimulated him more, if you paid more attention, etc. Then, they turn around and say, you should wait some kids start speaking at 4! Very nice, but his diagnosis is not this and I can't wait around and lose another year! I have come across some professionals that are so non sympathetic, it blows me away. One doctor said she only wished she could find the problem in a blood test that way she would know what it was! I couldn't believe she was implying she would like to find a Fragile X or something. Then she went on to say that we don't know what is wrong with " these kids " ! And a speech therapist I met once told me that my son was a candidate for YEARS of therapy. When I explained that he understood what I was saying but that he couldn't explain himself, she yelled at me that HE WAS NOT NORMAL! Very frustrating this " beautiful " system. However, you do come across some really great professionals and those are the ones you want to keep your child working with to get him to progress. I feel frustrated also when I try to teach him names of animals and have no idea if he knows them. It's very hard for me to assess what he does and does not understand. Tina Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 17, 2003 Report Share Posted May 17, 2003 Hi Lynn, My son is 4 and I think he can read some words. He has a strong visual memory and this may be why. He can spell and write his.Where are you in Mississippi? I live in Ridgeland/. Who gave you the apraxia diagnosis? It took two years for someone to even mention apraxia for my son. But I have wondered about it for a long time. Ben 4 apraxia, 6 ~NT --- In , " noisii " <noisii@h...> wrote: > > Thankfully we were soon transferred to a little town in Mississippi, > where has a great SLP and has progressed to some coherent > speech without his dynavox! > > I am almost positive he is reading, but because of the language > barrier I can't tell for sure...Does anyone else have this problem??? > > Thanks for listening > Lynn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 17, 2003 Report Share Posted May 17, 2003 Hi Lynn, Thank you for your kind words and suggestions. Since I am from Canada, I have asked around for Pro Efa here and they don't have it, so I was wondering if I could get a telephone number to call and order from the states. I don't care the charge (not that I'm rich or anything) I'm willing to try everything I can to help my boy. If you could get back to me sometime, I would really appreciate it. Take care, and I am so pleased to hear your son is talking now. Isn't it wonderful to hear their little voices?........I am still dreaming of that day. Thanks again for making me feel hopeful, Tina >From: " frank sabel " <sawyera@...> >Reply- >< > >Subject: Re: [ ] Introduction and question >Date: Sat, 17 May 2003 13:42:51 -0400 > >To Tina , > >Let me tell you a story about my son. I too always knew he understood >everything we were saying and I always wondered what was going on in that >beautiful little head of his. My concerns started when he was about 15 >months old (speech delay) and I brought it up at his 18 month check up and >was told " wait until his 24 month check up " . In hindsight, I wish I would >have had him evaluated at 18 months, but he was my first child and I had no >experience, etc... Anyway, he started speech and occupational therpay at >27 months old. At that time he had 10-12 words. He started one Pro-EFA >per day on April 10th of this year. Today he has about 200 words. Just >this morning we were coloring b/c I am trying to get him to draw a circle. >As a reward for his hard work, I got out a sticker book to give him a >sticker for doing a " Good Job! " Well, the stickers are all different >animals and he was really excited about the stickers. I asked him which >one he wanted and he pointed to the cow and said, " Cow. Moo. " I couldn't >believe it. Every since he was 2 years old I have been trying to teach him >all of the animal sounds with his Fisher Price farmhouse or barn (you know >what I mean) and I never knew if he was getting it. So in any event, we >went through every animal sticker and he named and made the sound for most >if not all of them - sheep, cat, dog, horse, pig, monkey, tiger, zebra, >elephant, etc... > >So, I guess what I'm saying by this long story is that our children are >developing this vocabulary all along and they just can't yet express it. >That is why I've always been so adamant when an evaluator questions his >receptive or cognitive abilities. So, everything you do with your son does >make a difference. Don't get discouraged. > >There is planty you can do as a parent between now and August to help your >son. There is plenty of information on the internet. My son loves >puzzles, flash cards, and drawing on the chalk board. He really learns >alot of words playing with flash cards and puzzlesand when we play with the >chalk board. Something else you could do with your son is play with play >doh and string wooden beads. Stacking blocks and nesting cups are both >good too. Oh, and my son loves to play with shaving cream in the bath tub >- a good sensory integration type therapy. > >You can read alot about the Pro-EFA from this group and also in the book, >The LCP Solution, by Dr. Stordy. It is an essential fatty acid >nutritional treatment for ADD/ADHD, Dyspraxia, Dyslexia, etc... It not >only helps with talking but with attention, focus, behavior, etc... > >Good luck. You sound like a very concerned and loving mother to me! > Re: [ ] Introduction and question > > > Hi Lynn, > > My son is 2.8 years old and he was diagnosed with dysphragia. I suspect >he > has ADD and sensory issues also. He's hyperactive, doesn't listen, etc. > > He has a total of 2 words to his vocab. and uses da or di for everything > else. We start therapy in August, ot, st, etc. > > AT this point, my great hope is that he will learn to talk. I'm not >getting > anywhere with him by myself. I wonder how much progress parents have >made > from their therapy start date? I didn't know they give meds for speech > disorders. Should I ask my pediatrician for something? > > Yes, I was also told I was a bad mom, family included. If you >stimulated > him more, if you paid more attention, etc. Then, they turn around and >say, > you should wait some kids start speaking at 4! > > Very nice, but his diagnosis is not this and I can't wait around and >lose > another year! > > I have come across some professionals that are so non sympathetic, it >blows > me away. One doctor said she only wished she could find the problem in >a > blood test that way she would know what it was! I couldn't believe she >was > implying she would like to find a Fragile X or something. Then she went >on > to say that we don't know what is wrong with " these kids " ! And a speech > therapist I met once told me that my son was a candidate for YEARS of > therapy. When I explained that he understood what I was saying but that >he > couldn't explain himself, she yelled at me that HE WAS NOT NORMAL! > > Very frustrating this " beautiful " system. However, you do come across >some > really great professionals and those are the ones you want to keep your > child working with to get him to progress. > > I feel frustrated also when I try to teach him names of animals and have >no > idea if he knows them. It's very hard for me to assess what he does and > does not understand. > > > Tina > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 17, 2003 Report Share Posted May 17, 2003 Try www.nordicnaturals.com or lisa@... that is where I ordered mine from initially until I found a Health Food Store that carried it. Re: [ ] Introduction and question Hi Lynn, Thank you for your kind words and suggestions. Since I am from Canada, I have asked around for Pro Efa here and they don't have it, so I was wondering if I could get a telephone number to call and order from the states. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 17, 2003 Report Share Posted May 17, 2003 Hi Tina, I am not sure where in Canada you live, but there are a few health food stores that are carrying Pro-EFA. If you are in the Toronto area, Ambrosia in Thornhill and The Big Carrot in Toronto are carrying it. Rhonda son Cherry President, ECHO The Voice of Canadian Children with Oral Motor Speech Disorders http://apraxiaontario.homestead.com Re: [ ] Introduction and question Hi Lynn, Thank you for your kind words and suggestions. Since I am from Canada, I have asked around for Pro Efa here and they don't have it, so I was wondering if I could get a telephone number to call and order from the states. I don't care the charge (not that I'm rich or anything) I'm willing to try everything I can to help my boy. If you could get back to me sometime, I would really appreciate it. Take care, and I am so pleased to hear your son is talking now. Isn't it wonderful to hear their little voices?........I am still dreaming of that day. Thanks again for making me feel hopeful, Tina Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 18, 2003 Report Share Posted May 18, 2003 Hi Rhonda, I really appreciate the info. I'm in Montreal. I'll look it up. Thanks again, Tina >From: " Rhonda son " <rjacobson@...> >>Hi Tina, > >I am not sure where in Canada you live, but there are a few health food >stores that are carrying Pro-EFA. If you are in the Toronto area, Ambrosia >in Thornhill and The Big Carrot in Toronto are carrying it. > >Rhonda son Cherry >President, ECHO >The Voice of Canadian Children with Oral Motor Speech Disorders >http://apraxiaontario.homestead.com > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 18, 2003 Report Share Posted May 18, 2003 Hi , you can also order it from the lcpsolution website at www.lcpsolution.com - you can choose from others too , like efalex... Re: [ ] Introduction and question Try www.nordicnaturals.com or lisa@... that is where I ordered mine from initially until I found a Health Food Store that carried it. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 18, 2003 Report Share Posted May 18, 2003 Or you can order it from www.kirkmanlabs.com at $17 a bottle...much cheaper than the $24 off the Nordic Naturals site. Re: [ ] Introduction and question Hi Lynn, Thank you for your kind words and suggestions. Since I am from Canada, I have asked around for Pro Efa here and they don't have it, so I was wondering if I could get a telephone number to call and order from the states. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 20, 2003 Report Share Posted May 20, 2003 Rhonda Hi, I just got in touch with the Big Carrot and ordered Pro EFA for my son, however, there were no indications on how much to give a child of 2.9 years of age. Who do I ask, would you know? I would really appreciate your help. Should I be concerned about mercury in this product? Any info. you can give me would be appreciated. Tina >From: " Rhonda son " <rjacobson@...> >Reply- >< > >Subject: Re: [ ] Introduction and question >Date: Sat, 17 May 2003 21:55:05 -0400 > >Hi Tina, > >I am not sure where in Canada you live, but there are a few health food >stores that are carrying Pro-EFA. If you are in the Toronto area, Ambrosia >in Thornhill and The Big Carrot in Toronto are carrying it. > >Rhonda son Cherry >President, ECHO >The Voice of Canadian Children with Oral Motor Speech Disorders >http://apraxiaontario.homestead.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 20, 2003 Report Share Posted May 20, 2003 Hi Tina! Below is an archived message with an answer to your question on this. You can even give one capsule of ProEFA to a newborn as Dr. Katz once explained in an answer to our group http://www.cherab.org/information/dietaryeffects/efatips.html#Here (and you can even read the many amazing results of those that did try this in the archives here) As you can imagine -there probably isn't a question you could ask that hasn't come up already in regards to EFAs -we are all parents and none of us knew about this stuff before. Some of the questions that have come up have even been pretty much out there on the Richter scale. (Rhonda -am I reading this correctly -are you really telling people to buy magic fish oil from The Big Carrot?!!! Boy when I stopped working in animation and toy design to work with this nonprofit I had no idea this would be so similar!) From: " kiddietalk " <kiddietalk@...> Date: Mon Apr 28, 2003 3:35 pm Subject: Re: Proefap dosage/ Hi Pam! I am at the stopping point for me so far, I don't notice any improvement by going higher -or changing dosages (and so far not at all decreasing) I go by observation. I don't know if there is any one 'real' answer that is right for all however -depends on the child, or who you ask. I say to start low and very slowly work up so you can observe what is best for your child. Raise the dosage a bit (or change) when you see a plateau. Most researchers say to start high and then lower the dosage to maintain. http://www.drstordy.com for example I say you need to make sure that there is a small amount of Omega 6 (GLA) with the Omega 6 (DHA and EPA) or it didn't appear to work -or have more than a mild effect on almost of our children when we did various feedbacks. Most nutritionists say we consume enough Omega 6 in our diet that we don't need the Omega 6 in the supplement. As always -the proof is in the pudding guys. I found that we do. I also always say to make sure you have your child evaluated by a neurodevelopmental MD and SLP 'before' you start supplementation - you may be a skeptic -but don't underestimate how quickly your child will change if your child is one of the 90% plus EFA supplementation 'works' for. It's in one day to three weeks for almost all of our children -and that is pretty fast. When you go for the eval - share credible information you find online about PUFA supplementation (or now just take along your copy of The Late Talker book!) and show this to your child's MD and SLP too. You would want to work with them on exact dosage. There are some research articles to present to your child's MD here http://www.dhadoc.com/pressroom.html and http://www.dhadoc.com/articles.html I changed my view on what I thought was a high dosage after I read The Omega 3 Connection written by Stoll MD of Harvard Medical School and learned that the PUFA levels in the breastmilk of American mothers is very low in comparison to the milk from mothers of many other countries in the rest of the world. I also learned what the huge normal daily dietary dosages of EFAs were for Eskimos (far greater than what we or our children supplement with to say the least!) " Interest in Omega-3-PUFA was sparked off by studies on Greenland Eskimos who do not suffer from heart attacks, despite a high intake of fat and cholesterol. This was attributed to high intakes of sea- foods, especially fish, which contains large amounts of long chain Omega-3-PUFA like EPA (eicosopentanoic acid) and DHA (docosa hexanoic acid). " http://www.healthlibrary.com/reading/yod/nov98/know.htm You can go by Recommended Dosage charts like this one from ISSFAL that have just come out (there have been Recommended EFA Dosage Charts for dogs and horses for years now!) ISSFAL Recommended Dosage Chart Category Weight Dosage Infants (1-18 months) 0-15 lbs 32 mg/lb EPA+DHA Children (1.5-15 yrs) 5 mg/lb EPA+DHA Adults (15-115 yrs) 650 mg EPA+DHA 220 mg EPA -minimum 220 mg DHA -minimum Lactating Women 300 mg DHA daily " And a bit higher dosage I was also told was in a recent newsletter of the American Hospital Association -one gram of EFAs a day per patient. Or read this to find an interesting answer to your question! " More research needs to be done before dietary recommendations can be determined, " she said. " However, for now, based on this research and the multitude of findings reported on the literature, increasing the ratio of n-3 PUFA to n-6 PUFA, not the total amount of fat, in the diet appears to be advantageous. " http://agnews.tamu.edu/dailynews/stories/NUTR/Jun1302a.htm Hope that helps! ===== Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 20, 2003 Report Share Posted May 20, 2003 You can give 1000mg of Pro EFA (1 capsule) to a baby?!! A newborn? I will read up on this as soon as my ascending migraine relents its hold on my poor aching head!!!! >From: " kiddietalk " <kiddietalk@...> >Reply- > >CC: tina_vsmith@... >Subject: [ ] Re: Introduction and question >Date: Tue, 20 May 2003 15:19:41 -0000 > >Hi Tina! > >Below is an archived message with an answer to your question on >this. You can even give one capsule of ProEFA to a newborn as Dr. >Katz once explained in an answer to our group > http://www.cherab.org/information/dietaryeffects/efatips.html#Here >(and you can even read the many amazing results of those that did >try this in the archives here) As you can imagine -there probably >isn't a question you could ask that hasn't come up already in >regards to EFAs -we are all parents and none of us knew about this >stuff before. Some of the questions that have come up have even >been pretty much out there on the Richter scale. > >(Rhonda -am I reading this correctly -are you really telling people >to buy magic fish oil from The Big Carrot?!!! Boy when I stopped >working in animation and toy design to work with this nonprofit I >had no idea this would be so similar!) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 21, 2003 Report Share Posted May 21, 2003 Hi, I'm back. Forgive me my ignorance. These days I'm so afraid of doing anything wrong that I seem to have lost trust in myself. So, from the information I read one capsule is 1000mg and I can give this to my 2.9 year old son right? It's the amount that is suggested for an adult but it seems that this is ok for children? I'm getting the Pro-efa in a couple of days. I'm in Montreal and as I mentioned I ordered it from Toronto. I am waiting for intervention in August if all goes well. In the meantime I have tried children DHA for my son and after that he has been able to say some words but not consistantly and not all intelligeably. Example, do (dog) wather (water) hello?! yeah? yeah?, wa (rock) okay. op, dow (up and down) ju (juice) mmmm (milk) etc. If this little capsule has a small effect on my son, you can imagine how anxious I am to give him a higher dose to see if this helps to a greater extent. Anyway, I would appreciate confirmation on the 1 capsule/1000 mg being ok to give my son. As for looking into this with my pediatrician.........I would rather see if there are any results and then mention it to him for monitoring and perhaps have him contact Dr. Katz (I believe that's his name) for further questions. Thank you for your understanding, your help and your patience in advance, Tina >From: " kiddietalk " <kiddietalk@...> >Reply- > >CC: tina_vsmith@... >Subject: [ ] Re: Introduction and question >Date: Tue, 20 May 2003 15:19:41 -0000 > >Hi Tina! > >Below is an archived message with an answer to your question on >this. You can even give one capsule of ProEFA to a newborn as Dr. >Katz once explained in an answer to our group >http://www.cherab.org/information/dietaryeffects/efatips.html#Here >(and you can even read the many amazing results of those that did >try this in the archives here) As you can imagine -there probably >isn't a question you could ask that hasn't come up already in >regards to EFAs -we are all parents and none of us knew about this >stuff before. Some of the questions that have come up have even >been pretty much out there on the Richter scale. > >(Rhonda -am I reading this correctly -are you really telling people >to buy magic fish oil from The Big Carrot?!!! Boy when I stopped >working in animation and toy design to work with this nonprofit I >had no idea this would be so similar!) > >From: " kiddietalk " <kiddietalk@...> >Date: Mon Apr 28, 2003 3:35 pm >Subject: Re: Proefap dosage/ > >Hi Pam! > >I am at the stopping point for me so far, I don't notice any >improvement by going higher -or changing dosages (and so far not at >all decreasing) I go by observation. I don't know if there >is any one 'real' answer that is right for all however -depends on >the child, or who you ask. > >I say to start low and very slowly work up so you can observe what >is best for your child. Raise the dosage a bit (or change) when you >see a plateau. Most researchers say to start high and then lower >the dosage to maintain. http://www.drstordy.com for example > >I say you need to make sure that there is a small amount of Omega 6 >(GLA) with the Omega 6 (DHA and EPA) or it didn't appear to work -or >have more than a mild effect on almost of our children when we did >various feedbacks. Most nutritionists say we consume enough Omega 6 >in our diet that we don't need the Omega 6 in the supplement. > >As always -the proof is in the pudding guys. I found that we do. > >I also always say to make sure you have your child evaluated by a >neurodevelopmental MD and SLP 'before' you start supplementation - >you may be a skeptic -but don't underestimate how quickly your child >will change if your child is one of the 90% plus EFA >supplementation 'works' for. It's in one day to three weeks for >almost all of our children -and that is pretty fast. When you go >for the eval - share credible information you find online about PUFA >supplementation (or now just take along your copy of The Late Talker >book!) and show this to your child's MD and SLP too. You would want >to work with them on exact dosage. There are some research >articles to present to your child's MD here >http://www.dhadoc.com/pressroom.html and >http://www.dhadoc.com/articles.html > >I changed my view on what I thought was a high dosage after I read >The Omega 3 Connection written by Stoll MD of Harvard Medical >School and learned that the PUFA levels in the breastmilk of >American mothers is very low in comparison to the milk from mothers >of many other countries in the rest of the world. I also learned >what the huge normal daily dietary dosages of EFAs were for Eskimos >(far greater than what we or our children supplement with to say the >least!) > > " Interest in Omega-3-PUFA was sparked off by studies on Greenland >Eskimos who do not suffer from heart attacks, despite a high intake >of fat and cholesterol. This was attributed to high intakes of sea- >foods, especially fish, which contains large amounts of long chain >Omega-3-PUFA like EPA (eicosopentanoic acid) and DHA (docosa >hexanoic acid). " >http://www.healthlibrary.com/reading/yod/nov98/know.htm > >You can go by Recommended Dosage charts like this one from ISSFAL >that have just come out (there have been Recommended EFA Dosage >Charts for dogs and horses for years now!) > >ISSFAL >Recommended Dosage Chart >Category Weight Dosage > >Infants (1-18 months) 0-15 lbs 32 mg/lb EPA+DHA >Children (1.5-15 yrs) 5 mg/lb EPA+DHA >Adults (15-115 yrs) 650 mg EPA+DHA >220 mg EPA -minimum >220 mg DHA -minimum >Lactating Women 300 mg DHA daily " > >And a bit higher dosage I was also told was in a recent newsletter >of the American Hospital Association -one gram of EFAs a day per >patient. > >Or read this to find an interesting answer to your question! > > " More research needs to be done before dietary recommendations can >be determined, " she said. " However, for now, based on this research >and the multitude of findings reported on the literature, increasing >the ratio of n-3 PUFA to n-6 PUFA, not the total amount of fat, in >the diet appears to be advantageous. " >http://agnews.tamu.edu/dailynews/stories/NUTR/Jun1302a.htm > >Hope that helps! > >===== > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 23, 2003 Report Share Posted May 23, 2003 > Hi. My name is . I have a 8yr old son diagnosed with AS/HFA > at the begining of the yr. I also have a 5 yr old daughter > overcoming selective mutism. We are just starting to go dairy free > and will go gluten free shortly. We're easing into it. I've been > reading all day about chelation and think this is something I'd like > to try for my kids. I suspect my ds, especially, may have high > levels of mercury. He has 4 amalgum filling and when he started > preschool they made him get another MMR because he had the last one > 1 day before his birthday. I'm still fuming about that. If I'd > only known then..... There is a DAN Dr. ~45mins from us. (we live > in a small town in IA-everything is ~45 mins from us, lol) This Dr. > is a Chiro. That got me to thinking I have a very good friend who > is a Chiro who could order the hair test for me. Yup. And a lot of other stuff you might need, like letting you order supplements at wholesale from some of the vendors who like to sell through doctors. > But she doesn't know about chelation. She may well know more about it than the DAN! doctor. You'd be surprised. > My question is could my friend also order the > tests to monitor my childrens chelation/health? Probably. It depends on your state's laws. Very little testing is actually needed. >Are those easily > interpreted or do you need training for that? Some special training is needed, but very few DAN! doctors or " detox doc's " have it - you or your friend could easily learn it. Or just come discuss your tests here to get pointed in the right direction. Andy . . . . . .. . Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2005 Report Share Posted January 6, 2005 > > > >Hi Debbie Welcome! I am in UK also, 4.5 yr son awaiting formal diagnosis (probable AS) have been CF since 5 mths due to lactose intolerance and avoiding high Phenols and artificial stuff for last 9 mths. Started Houston Enzymes six weeks ago (trying this as an alternative to going to GF which was recommended by Sunderland ARU). We have seen significant improvements and life is much calmer at the moment. > Or do I need to get a member of staff to add them to his drink > before he eats (fraught with difficulties I think). My son started school yesterday, prior to term starting we contacted school to discuss, explaining what enzymes were and why we wanted to continue with them for mid morning snack and lunch. 's book was helpful (the SENCO has borrowed it!). Result - we send him with dry enzymes in a small plastic bottle to which the support staff add juice provided by us in lunchbox and he drinks with a straw. > Let me know if you want amy more info Best Rgds > > > > > -- > No virus found in this outgoing message. > Checked by AVG Anti-Virus. > Version: 7.0.300 / Virus Database: 265.6.8 - Release Date: 03/01/05 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 8, 2005 Report Share Posted January 8, 2005 > One other question. I understand that contact with liquid activates the > enzymes. Does this mean that splitting the capsules and exposing the > enzymes to the air is OK? So long as you re-close the capsule right away and do NOT store it in the refrigerator, it should be okay unless you are opening the capsule outside in the rain. Dana Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 4, 2008 Report Share Posted November 4, 2008 Hello, I have been a lurker here for several weeks and have tried to post several times but have been thwarted by one thing or another (mostly children!) from doing so. My husband and I have followed WAPF for over 4 years now with varying degrees of success. The stakes were raised last year when I weaned our 3 year old and our cow went dry. I was also expecting a baby and was very, very sick. So our diet went downhill. What happened next has left us reeling ever since. Our 3 year old daughter became very sick with Crohn's Disease, Primary Sclerosing Cholangitis and Autoimmune Hepatitis. The second two are liver diseases that are autoimmune and are associated with, but not caused by, Crohn's Disease. By the time we got her in to see a specialist she was so sick she wasn't playing or hardly eating at all. I was still struggling with my pregnancy (it turns out the baby has a genetic disorder that was making me ill) and was unable to pull it together to get back to eating healthy. Last week, over a year later, was the first week that we weren't running to the doctor for either two of my daughters or myself. So I have pulled it together enough now to think that we might be able to successfully get her on the right path and get her off of some of the terrible medications that she is on and get her actually healthy. I have learned two things from the past year: Pearl, my 3 (now 4) year old, does not respond well to food with live cultures in it, since an over active immune system is her problem in the first place. And, since she is 4 years old, she doesn't necessarily want to eat in a way that makes her feel better. So I am cleaning out our cabinets and starting from scratch - again. The first time we went with WAPF things went very well, but our situation was close to perfect. We lived in the Philadelphia suburbs (Phoenixville) with a wonderful farmer's market nearby where we could get everything we needed. Now we live in rural TN where most things have to be mail ordered or sought out over an hour away. To make things more difficult, my wonder week is over and we are back to doctor's visits almost daily. So my strategy is to start out with the Specific Carbohydrate Diet and then to slowly work our way up back to a good, solid Nourishing Traditions type diet. Here is my question: I am leaving out any grains for now (eventually going back only to sourdough bread and soaked rice, I hope) so I am going to go with almond meal as a substitute. If I were to soak the almonds and then dehydrate them, could I grind them up to make almond flour? Thanks in advance for any insight any of you may have. in TN www.thecorders.blogspot.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 6, 2010 Report Share Posted May 6, 2010 I don't know about the schools but I am so happy to hear about your daughter's good results. Oh my I know what those meltdowns are like my daughter too suffered with them for years. It makes life so isolating. I am so happy for your daughter and your family. And that all that suffering has been reduced. Pam > > Hi everyone. I'm Michele and I currently live in Knoxville. I have a 12 YO daughter with AS. We'll be moving to Huntsville or Madison Al over the summer and I was wondering if anyone in this group has any experience with the public schools there. I know the Madison schools are great, but are they great for kids with AS? > > Also while reading some of the posts, I noticed that there was a discussion about risperdal/abilify/and ssri's... My daughter had a terrible time with meltdowns, hyperactivity, anger outbursts etc...which made it next to impossible to send her to school, so I homeschooled her for four years. She has been on Zoloft since she was 7 which cut the outbursts in half, so it was good for us, but still not keeping her stable enough to trust leaving her with anyone. We added Abilify in August and it was like a miracle. She seemed to change overnight. It was like she calmed down, matured, started talking to people in a more normal way...it was amazing. She did gain a lot of weight...about 15 lbs in 2 months, I know this sounds extreme, but her Dr put her on Metformin for weight control and she has stopped the weight gain. We were able to put her in school within 3 weeks of starting the Abilify, and the teachers adore Josie and she's had only one meltdown all year. They actually wonder what I was so worried about. Compare that to not even being able to leave her for an hour with a scout troop 2 months before the Abilify and you can see what a difference it made. So I hope this info helps someone to make a decision. Meds can be scary, but we've had such a great experience with this one. > > Anyway I really digressed there, but I am interested in hearing if anyone in this group has info about the Madison schools... > > Thanks:) > Quote Link to comment Share on other sites More sharing options...
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